tag:blogger.com,1999:blog-82921283296698722572018-01-23T07:19:50.166-08:00Life...with a Twist of LymeJoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-8292128329669872257.post-76521368235424540302011-08-21T09:53:00.000-07:002011-08-21T10:33:13.211-07:00Watch this!!!<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-EKNsqC6lvbs/TlE4ASQvPTI/AAAAAAAABYc/o9PZpBPVtFg/s1600/uos-dvd_0.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://1.bp.blogspot.com/-EKNsqC6lvbs/TlE4ASQvPTI/AAAAAAAABYc/o9PZpBPVtFg/s400/uos-dvd_0.jpg" width="239" /></a></div><br />You can now watch the entire documentary film about Lyme disease, <b><i>Under Our Skin</i></b>, on line! This film is a MUST-SEE for anyone who has (or suspects they have) Lyme disease!! (P.S. Yes, there are commercials, just be patient!)<br /><br /><object height="288" width="512"><param name="movie" value="http://www.hulu.com/embed/xFbXmBfL9iasTuTo_zEs-Q"></param><param name="allowFullScreen" value="true"></param><embed src="http://www.hulu.com/embed/xFbXmBfL9iasTuTo_zEs-Q" type="application/x-shockwave-flash" width="512" height="288" allowFullScreen="true"></embed></object>JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com2tag:blogger.com,1999:blog-8292128329669872257.post-71354723871161394682011-08-16T11:15:00.000-07:002011-08-16T11:55:53.218-07:00Lots and lots of important info!<div style="text-align: center;">&nbsp;<a href="http://4.bp.blogspot.com/-01QiA0xZ4xY/TkqzjmXtVnI/AAAAAAAABYU/j-jc0V-4afQ/s1600/cows.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="299" src="http://4.bp.blogspot.com/-01QiA0xZ4xY/TkqzjmXtVnI/AAAAAAAABYU/j-jc0V-4afQ/s400/cows.jpg" width="400" /></a></div><br /><div style="font-family: Times,&quot;Times New Roman&quot;,serif;"><br /><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: medium; font-weight: normal;"> <span style="font-size: large;">I want to catch you up on miscellaneous exciting news in the world of Lyme research, so this is a bit of a hodgepodge post.</span></span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: medium; font-weight: normal;"><span style="font-size: large;">&nbsp;</span></span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: medium; font-weight: normal;"><span style="font-size: large;">1) A recent paper in the Journal of Neuroinflammation, written by Judith Miklossy, makes an excellent case for <b>Alzheimer's being a disease caused by spirochetes!</b>&nbsp; Believe it or not, Lyme and syphilis aren't the only spirochetes implicated in this....even DENTAL spirochetes are included as probable causal agents of dementia!&nbsp;</span></span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: medium; font-weight: normal;"><span style="font-size: large;">&nbsp;</span></span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: medium; font-weight: normal;"><span style="font-size: large;">Here is the abstract, plus a link to the <i>entire</i> paper:</span></span></h3></div><h1 style="color: blue; font-family: Times,&quot;Times New Roman&quot;,serif; font-weight: normal;"><span style="font-size: large;"><a href="http://www.jneuroinflammation.com/content/pdf/1742-2094-8-90.pdf"><b>Alzheimer's disease - a neurospirochetosis. </b></a></span></h1><div style="color: blue; font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: large;"><i>It is established that chronic spirochetal infection can cause slowly progressive dementia, brain atrophy and amyloid deposition in late neurosyphilis. Recently it has been suggested that various types of spirochetes, in an analogous way to Treponema pallidum, could cause dementia and may be involved in the pathogenesis of Alzheimer's disease (AD). Here, we review all data available in the literature on the detection of spirochetes in AD and critically analyze the association and causal relationship between spirochetes and AD following established criteria of Koch and Hill. The results show a statistically significant association between spirochetes and AD (P = 1.5 x 10-17, OR = 20, 95% CI = 8-60, N = 247). When neutral techniques recognizing all types of spirochetes were used, or the highly prevalent periodontal pathogen Treponemas were analyzed, spirochetes were observed in the brain in more than 90% of AD cases. Borrelia burgdorferi was detected in the brain in 25.3% of AD cases analyzed and was 13 times more frequent in AD compared to controls. Periodontal pathogen Treponemas (T. pectinovorum, T. amylovorum, T. lecithinolyticum, T. maltophilum, T. medium, T. socranskii) and Borrelia burgdorferi were detected using species specific PCR and antibodies. Importantly, co-infection with several spirochetes occurs in AD. The pathological and biological hallmarks of AD were reproduced in vitro. The analysis of reviewed data following Koch's and Hill's postulates shows a probable causal relationship between neurospirochetosis and AD. Persisting inflammation and amyloid deposition initiated and sustained by chronic spirochetal infection form together with the various hypotheses suggested to play a role in the pathogenesis of AD a comprehensive entity. As suggested by Hill, once the probability of a causal relationship is established prompt action is needed. Support and attention should be given to this field of AD research. Spirochetal infection occurs years or decades before the manifestation of dementia. As adequate antibiotic and anti-inflammatory therapies are available, as in syphilis, one might prevent and eradicate dementia.&nbsp;</i></span></div><div style="color: blue; font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: large;"><br /></span></div><div style="color: blue; font-family: Times,&quot;Times New Roman&quot;,serif;"><h3 class="post-title entry-title" style="color: black; font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: medium; font-weight: normal;"><span style="font-size: large;"><span style="color: black;">Please read and re-read that last sentence in the abstract!! With proper antibiotic treatment "...one might prevent and eradicate dementia"</span>!&nbsp; That is FANTASTIC news indeed<span style="color: black;">!&nbsp;</span></span></span></h3><h3 class="post-title entry-title" style="color: black; font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: medium; font-weight: normal;"><span style="font-size: large;"><span style="color: black;">&nbsp;</span></span></span></h3><h3 class="post-title entry-title" style="color: black; font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: medium; font-weight: normal;"><span style="font-size: large;"><span style="color: black;">If only the medical world as a whole will pay attention to this paper.....?&nbsp; That is the $64,000.00 question, unfortunately.&nbsp; I hope the IDSA won't try to stand in the way of treating dementia with long-term antibiotics!!&nbsp;</span></span></span></h3><h3 class="post-title entry-title" style="color: black; font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: medium; font-weight: normal;"><span style="font-size: large;"><span style="color: black;">&nbsp;</span></span></span></h3></div><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: large;"><span style="font-weight: normal;">2)&nbsp; <b><a href="http://lymemd.blogspot.com/2011/07/everything-you-thought-you-knew-about.html">Everything you thought you knew about cyst busters is wrong</a></b></span><span style="color: black; font-weight: normal;">!!&nbsp; </span></span><span style="color: black; font-size: large; font-weight: normal;">This is the title of a post by <a href="http://lymemd.blogspot.com/">LymeMD</a>, a fellow blogger who is a LLMD in Germantown, MD.</span><span style="font-size: large;"><span style="color: black; font-weight: normal;">&nbsp; He discusses a new<a href="http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/2710311-eva-sapi-articlebiofilmsantbiotics-may-program"> study by Eva Sapi</a></span> </span><span style="font-size: large; font-weight: normal;">that shows that Tigecycline and </span><span style="font-size: large; font-weight: normal;">Tindamax reduce both spirochetal and round body (cystic) forms of Lyme by ~90%!</span><span style="font-size: large;">&nbsp; WOO-HOO!!&nbsp; </span><span style="font-size: large; font-weight: normal;">I don't know about you, but I'm so jazzed by this!&nbsp; I will be talking to my doctor for sure!</span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: small; font-weight: normal;">&nbsp;</span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: large; font-weight: normal;">Of course this is not the end of the story.....<a href="http://lymemd.blogspot.com/2011/08/biofilms.html">biofilms remain a big issue</a>.&nbsp; It is very very difficult to kill bacteria that are protected by a biofilm and Lyme definitely uses biofilms to avoid antibiotics and preserve itself.&nbsp; Still, the results of the Sapi study are extremely interesting, showing exactly which antibiotics are (or are not) effective against the spirochetal and cystic forms of Lyme.</span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: small; font-weight: normal;">&nbsp;</span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: large; font-weight: normal;">3) <b>Tracking Lyme disease in dogs may help prevent Lyme in humans.</b> This is from <a href="http://consumer.healthday.com/Article.asp?AID=655753">a news article</a> in HealthDay: a recent study by a team led by Dr. Paul Mead reveals that when 1% or fewer dogs test positive for Lyme, the risk for human infection is relatively low.&nbsp; But when 5% or more dogs in an area have Lyme, the risk for humans to contract Lyme disease is high.&nbsp;</span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: small; font-weight: normal;">&nbsp;</span></h3><h3 class="post-title entry-title" style="font-family: Times,&quot;Times New Roman&quot;,serif;"><span style="font-size: large; font-weight: normal;">4) This </span><span style="font-size: large; font-weight: normal;"><a href="http://consumer.healthday.com/Article.asp?AID=655753">same news article</a></span><span style="font-size: large; font-weight: normal;"> also discussed another study from researchers in </span><span style="font-size: large; font-weight: normal;">Germany which says that <b>pastures with domestic livestock such as cows and goats have fewer ticks in general and fewer ticks with Lyme disease!</b>&nbsp; Let's go get us some cows!! :)</span></h3>JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com0tag:blogger.com,1999:blog-8292128329669872257.post-68449833030382777852011-07-22T08:39:00.000-07:002011-07-22T08:42:24.472-07:00The untruths told by the CDC are getting WORSE, not better!<div style="text-align: center;">&nbsp;<a href="http://3.bp.blogspot.com/-zn-XkaBEAfo/TimZYt8D-UI/AAAAAAAABX0/Z59OJaY_zdo/s1600/deertick.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="267" src="http://3.bp.blogspot.com/-zn-XkaBEAfo/TimZYt8D-UI/AAAAAAAABX0/Z59OJaY_zdo/s400/deertick.jpg" width="400" /></a></div><br />From an email I received from a Lyme Warrior and friend:<br /><br /><b><span style="font-size: small;"><i><span style="color: blue;">For those who think we are making progress with the establishment regarding Lyme disease, this will likely cause you to rethink that idea. In my eleven years of Lyme advocacy I've watched the CDC steadily retreat from a more balanced presentation of Lyme to one where they walk in lockstep with the IDSA, spewing the same myths and misinformation. Sadly rather than progress with regards to understanding Lyme, it seems the CDC is choosing to move farther and farther from the truth.</span></i></span></b><br /><br /><b><span style="color: blue;"><span style="font-size: small;">Below is just a sample of lies from the CDC (bold text indicates the most egregious ones):</span></span></b><br /><i><span style="color: blue;"><br /></span></i><br /><div>Full text of CDC answers to Frequently Asked Questions about Lyme located here:</div><div><a href="http://www.cdc.gov/lyme/faq/index.html#" target="_blank">http://www.cdc.gov/lyme/faq/<wbr></wbr>index.html#</a></div><div><br /></div><div>CDC states:</div><div><br /></div><div><span style="font-family: Verdana,Arial,Helvetica,sans-serif; font-size: 14px; line-height: 18px;">"Finally, </span><span style="line-height: 18px;"><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>blacklegged ticks need to be attached for at least 24 hours before they can transmit Lyme disease.</b></span></span></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; font-size: 14px; line-height: 18px;">"</span></div><div><br /></div><span style="font-family: Verdana,Arial,Helvetica,sans-serif; font-size: 14px; line-height: 18px;">"There is, however, a </span><span style="line-height: 18px;"><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>great deal of misinformation regarding tickborne coinfections on the internet.</b></span></span></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; font-size: 14px; line-height: 18px;"> </span><span style="line-height: 18px;"><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>The possibility of having three or more tickborne infections or&nbsp;having&nbsp;pathogens such bartonella or mycoplasma (which have not been shown to be tickborne), is extremely unlikely."</b></span></span></span> <span style="border-collapse: separate; color: black; font-family: 'Book Antiqua'; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div style="word-wrap: break-word;"><span style="border-collapse: separate; color: black; font-family: 'Book Antiqua'; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div style="word-wrap: break-word;"><span style="border-collapse: separate; color: black; font-family: 'Book Antiqua'; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div style="word-wrap: break-word;"><span style="border-collapse: separate; color: black; font-family: 'Book Antiqua'; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div style="word-wrap: break-word;"><span style="border-collapse: separate; color: black; font-family: 'Book Antiqua'; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div style="word-wrap: break-word;"><span style="border-collapse: separate; color: black; font-family: 'Book Antiqua'; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="border-collapse: separate; color: black; font-family: 'Book Antiqua'; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="border-collapse: separate; color: black; font-family: 'Book Antiqua'; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div><div><div><div><span style="font-family: Verdana,Arial,Helvetica,sans-serif; font-size: medium;"><span style="font-size: 14px; line-height: 18px;"><span style="font-family: 'Book Antiqua';"><span style="font-size: small; line-height: normal;"><br /></span></span></span></span></div><div>"<span style="font-family: Verdana,Arial,Helvetica,sans-serif; font-size: 14px; line-height: 18px;">This means that if&nbsp;your blood tests positive, then it will likely&nbsp;continue to test&nbsp;positive for months or even years </span><span style="line-height: 18px;"><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>even though the bacteria are no longer present.</b></span></span></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; font-size: 14px; line-height: 18px;">"</span></div><div><br /></div><div><a href="http://www.cdc.gov/lyme/faq/index.html#cured" target="_blank">http://www.cdc.gov/lyme/faq/<wbr></wbr>index.html#cured</a></div><div><br /></div><div><span style="font-size: medium;"><span style="font-size: 14px;"></span></span><span style="font-size: medium;"><span style="font-size: 14px;">My serologic (blood) test for Lyme disease is still positive even though I finished 3 weeks of antibiotics. Does this mean I am still infected?</span></span></div><div><div style="font-family: Verdana,Arial,Helvetica,sans-serif; margin: 0px; padding: 0px;"></div><div style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 1.33em; margin: 0px 0px 1em; padding: 0px; text-align: left;"><span style="font-size: medium;"><span style="font-size: 14px;">No.&nbsp;The tests for Lyme disease detect antibodies made by the immune system to fight off the bacteria,&nbsp;</span></span><i style="margin: 0px; padding: 0px;"><span style="font-size: medium;"><span style="font-size: 14px;">Borrelia burgdorferi</span></span></i><span style="font-size: medium;"><span style="font-size: 14px;">. </span><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>Your immune system continues to make the antibodies for months or years after the infection is gone. </b></span></span><span style="font-size: 14px;">This means that once your blood tests positive,&nbsp;it will continue to test positive for months to years </span><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>even though the bacteria are no longer present.&nbsp;</b></span></span></span></div></div><div><br /><span style="font-size: medium;"><span style="font-size: 14px;">I heard that if I get Lyme disease I will always have it. Is that true?</span></span></div><div><div style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 1.33em; margin: 0px 0px 1em; padding: 0px; text-align: left;"><span style="font-size: medium;"><span style="font-size: 14px;">No. Patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints. Approximately 10-20% of patients experience fatigue, muscle aches, sleep disturbance, or difficulty thinking even after completing a recommended course of antibiotic treatment. </span><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>These symptoms cannot be cured by longer courses of antibiotics, </b></span></span><span style="font-size: 14px;">but they generally improve on their own, over time.</span></span></div><div style="color: #0061aa; font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 1.33em; margin: 0px 0px 1em; overflow: hidden; padding: 0px; text-align: right;"></div></div><div><span style="font-size: medium;"><span style="font-size: 14px;"></span></span><span style="font-size: medium;"><span style="font-size: 14px;">Can you recommend a doctor&nbsp;who is familiar with diagnosing and treating Lyme disease?</span></span></div><div><div style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 1.33em; margin: 0px 0px 1em; padding: 0px; text-align: left;"><span style="font-size: medium;"><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>The American Lyme Disease Foundation (ALDF) keeps a national list of doctors who are familiar with the diagnosis and treatment of Lyme disease and other tickborne infections. You can access this list by</b></span></span><span style="font-size: 14px;">:</span></span></div><ul style="font-family: Verdana,Arial,Helvetica,sans-serif; list-style-type: disc; margin: 0px 0px 0px 1em; padding: 0px;"><li style="margin: 0.7em 0px 0.7em 1.5em; padding: 0px;"><span style="font-size: medium;"><span style="font-size: 14px;">Visiting the&nbsp;</span></span><a href="http://www.aldf.com/" style="color: #0a29a5; display: inline-block; margin: 0px; padding: 0px 14px 0px 0px; text-decoration: none;" target="_blank" title="American Lyme Disease Foundation"><span style="display: inline; margin: 0px; padding: 0px; text-decoration: none;"><span style="font-size: medium;"><span style="font-size: 14px;">ALDF website&nbsp;</span></span></span><span style="font-size: medium;"><span style="font-size: 14px;"><img alt="External Web Site Icon" height="10" src="https://mail.google.com/mail/?ui=2&amp;ik=337e6fbe40&amp;view=att&amp;th=1314cac397c381ab&amp;attid=0.1&amp;disp=emb&amp;realattid=70cbd6d427412316_0.1.1&amp;zw" style="border-style: none; display: inline; margin: 0px 0.25em 0px 0px; padding: 0px; text-decoration: none; vertical-align: baseline; width: auto;" title="External Web Site Icon" width="14" /></span></span></a></li><li style="margin: 0.7em 0px 0.7em 1.5em; padding: 0px;"><span style="font-size: medium;"><span style="font-size: 14px;">Sending the ALDF an e-mail and asking for doctors in your area,&nbsp;</span></span><a href="mailto:physref@aldf.com?subject=ALDF%20Physician%20Reference" style="color: #0a29a5; margin: 0px; padding: 0px; text-decoration: none;" target="_blank"><span style="font-size: medium;"><span style="font-size: 14px;">physref@aldf.com</span></span></a></li></ul><div style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 1.33em; margin: 0px 0px 1em; padding: 0px; text-align: left;"><span style="font-size: medium;"><span style="font-size: 14px;">Please note that CDC cannot evaluate the professional qualifications and competence of individual doctors. The inclusion of a doctor on the ALDF list should not be seen as an endorsement by CDC. </span><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>Y</b></span></span></span><span style="font-family: Verdana; font-size: 14px;"><b>ou could also choose to see a doctor in your area who specializes in infectious diseases.&nbsp;</b></span><span style="font-size: 14px;">Often these doctors are affiliated with&nbsp;a university."</span></div></div><div><span style="font-size: medium;"><span style="font-size: 14px;"><br /></span></span></div><div><h2 style="color: #0c5205; font-family: 'Trebuchet MS',Arial,sans-serif; font-weight: normal; margin: 0px; padding: 0px;"><span style="font-size: medium;"><span style="font-size: 14px;">Why does CDC only link to one set of treatment guidelines?</span></span></h2><div style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 1.33em; margin: 0px 0px 1em; padding: 0px; text-align: left;"><span style="font-size: medium;"><span style="font-size: 14px;">CDC believes that the&nbsp;</span></span><span style="display: inline; margin: 0px; padding: 0px; text-decoration: underline;"><span style="font-size: medium;"><span style="font-size: 14px;"><a href="http://cid.oxfordjournals.org/content/43/9/1089.full" style="color: #0a29a5; display: inline-block; margin: 0px; padding: 0px 14px 0px 0px; text-decoration: none;" target="_blank">Infectious Disease</a></span></span></span><span style="display: inline; margin: 0px; padding: 0px; text-decoration: underline;"><span style="font-size: medium;"><span style="font-size: 14px;"><a href="http://cid.oxfordjournals.org/content/43/9/1089.full" style="color: #0a29a5; display: inline-block; margin: 0px; padding: 0px 14px 0px 0px; text-decoration: none;" target="_blank">Society of America (IDSA) guidelines</a></span></span></span><span style="font-size: medium;"><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>currently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease. The IDSA, with input from CDC expert</b></span></span><span style="font-size: 14px;"> </span><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>and other doctors, has developed and published Lyme disease treatment guidelines."&nbsp;</b></span></span></span></div><div style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 1.33em; margin: 0px 0px 1em; padding: 0px; text-align: left;"><span style="line-height: 18px;"><span style="font-size: medium;"><span style="line-height: 23px;">"</span><span style="font-size: 14px;">In contrast, Lyme disease in North America is caused by a specific type of bacteria,</span></span></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 18px;"><i style="margin: 0px; padding: 0px;"><span style="font-size: medium;"><span style="font-size: 14px;">Borrelia burgdorferi</span></span></i></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 18px;"><span style="font-size: medium;"><span style="font-size: 14px;">, which is transmitted by two species of blacklegged ticks,</span></span></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 18px;"><span style="font-size: medium;"><span style="font-size: 14px;">&nbsp;</span></span></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 18px;"><i style="margin: 0px; padding: 0px;"><span style="font-size: medium;"><span style="font-size: 14px;">Ixodes scapularis&nbsp;</span></span></i></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 18px;"><span style="font-size: medium;"><span style="font-size: 14px;">and</span></span></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 18px;"><span style="font-size: medium;"><span style="font-size: 14px;">&nbsp;</span></span></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 18px;"><i style="margin: 0px; padding: 0px;"><span style="font-size: medium;"><span style="font-size: 14px;">Ixodes pacificus</span></span></i></span><span style="font-family: Verdana,Arial,Helvetica,sans-serif; line-height: 18px;"><span style="font-size: medium;"><span style="font-size: 14px;">. </span><span style="font-family: Verdana; font-size: medium;"><span style="font-size: 14px;"><b>While&nbsp;blacklegged ticks exist in the southern U.S., their feeding habits in this region make them much less likely to maintain, sustain, and transmit Lyme disease."</b></span></span></span></span></div></div></div></div></div></span></span></span></div></span></div></span></div></span></div></span></div></span>*******************************************************************************<br /><br /><div style="background-color: white; color: blue;"><b>Of course, <i>WE</i> know better....we know that:</b></div><div style="background-color: white; color: blue;"><br /></div><div style="background-color: white; color: blue;"><b>(1) if you've had Lyme longer than a few weeks, you will likely need a LONG course of antibiotics to recover (months or even <i>years</i> of antibiotics).</b></div><div style="background-color: white; color: blue;"><b><br /></b></div><div style="background-color: white; color: blue;"><b>(2) Lyme-infected ticks have been found in 49 out of the 50 states.&nbsp; You can catch it literally <i>anywhere!</i> Lyme is also becoming a very serious problem in Europe and Asia.</b></div><div style="background-color: white; color: blue;"><b><br /></b></div><div style="background-color: white; color: blue;"><b>(3) If you have Lyme disease, or have ever had it, you should NEVER donate blood.&nbsp; There's too great a risk of passing the disease on to others.</b></div><div style="background-color: white; color: blue;"><b><br /></b></div><b><span style="background-color: white; color: blue;">(4) The IDSA guidelines were deliberately written to conceal the truth about Lyme disease; the controlling members of the panel have a vested financial interest in muddying the waters and making light of the issues.</span></b>&nbsp; <b>The CDC is now drinking the IDSA KoolAid (guzzling it, actually).</b>JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com1tag:blogger.com,1999:blog-8292128329669872257.post-26394425533349563582011-07-09T15:56:00.000-07:002011-07-09T15:56:10.285-07:00You know you have Lyme when....<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-TZUXIYLV80k/ThjbgNWDDvI/AAAAAAAABXw/iLGnoO3lR5g/s1600/370px-Green_ribbon.svg.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-TZUXIYLV80k/ThjbgNWDDvI/AAAAAAAABXw/iLGnoO3lR5g/s1600/370px-Green_ribbon.svg.png" /></a></div>Retrieved from the <a href="http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?%20f=9&amp;t=658&amp;view=next%20%20%20">"Truth About Lyme Disease Forums" on 5/6/2011</a> (and slightly edited)<br /><br />YOU KNOW YOU HAVE LYME WHEN:<br /><br />1) You don't care where your spouse goes, just as long as you don't have to go along.<br /><br />2) You are cautioned to slow down by the doctor instead of by the police.<br /><br />3) "Getting lucky" means finding your car in the parking lot.<br /><br />4) Your sweetie says, "Let's go upstairs and make love" and you answer, "Honey, I can't do both!"<br /><br />5) Everything hurts; but you don't know when or where it will hurt.<br /><br />6) You're asleep, but others worry that you're dead.<br /><br />7) You get exhausted from just waking up.<br /><br />8) Your children can do math better than you can.<br /><br />9) People call at 7 pm, and ask, "Did I wake you?"<br /><br />10) You know all the answers, but nobody asks you the questions [if for once you don't have brain fog].<br /><br />11) You look forward to your IV infusion of antibiotics [or oral antibiotics].<br /><br />12) You turn down the lights because of photosensitivity rather than romance.<br /><br />13) You sit in a rocking chair and get motion sickness. even when the rocking chair isn't moving.<br /><br />14) Your GPS becomes your best friend when driving.<br /><br />15) You get motion sickness when you drive. Forget about trying to be the passenger!<br /><br />16) You burn the midnight oil until 9:00 PM or 1 AM or 6 AM depending on your internal clock's daily computations. Everyday is different.<br /><br />17) You put the margarine in the toaster oven and try to butter your bread. You put the margarine in the cupboard, the knife in the refrigerator, and the toast in the sink. Then you walk around in circles trying to find the toast.<br /><br />18) You get exercise by going to the bathroom 10 or more times a day.<br /><br />19) One shelf of the refrigerator is filled with abx (or supplements, herbs, etc)<br /><br />20) You can't remember how to turn the shower off.<br /><br />21) You can't figure out how to get the key out of the ignition [you forgot<br />about the little black button you push in].<br /><br />22) You can't find your way home and you only took a walk around the block.<br /><br />23) When your little black book contains only names ending in M.D.<br /><br />24) You get winded playing chess.<br /><br />25) You look forward to a dull evening.<br /><br />26) The best part of your day is over when your alarm clock goes off.<br /><br />27) You have too much room in the house and not enough room in the medicine cabinet.<br /><br />28) When you wake up with that morning-after feeling and you didn't do anything the night before.<br /><br />29) When it takes longer to rest than to get tired.<br /><br />30)&nbsp; There are three signs of Lyme Disease. The first is your loss of memory, the other two I forget.<br /><br />31) The only part of your body that gets a "workout" are your thumbs - from clicking on that remote or mousepad all day.<br /><br />32) When your idea of cleaning the house is sweeping the floor with a glance.<br /><br />33) You know you have Lyme when you stop to think and forget to start again<br /><br />34) When you wake up screaming and stressed - then you realize you haven't fallen asleep yet.<br /><br />35) When your day was a total waste of makeup.<br /><br />36) When you think to yourself: "This ain't no party...this ain't no disco..."<br /><br />37) When all the pharmacists and lab workers in town know you on a first name basis.JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com4tag:blogger.com,1999:blog-8292128329669872257.post-12907841446232968992011-06-13T20:58:00.000-07:002011-06-13T21:04:17.456-07:00Nine Reasons for False Negative Lyme Blood Test ResultsFrom the Lyme Disease Foundation brochure: <i>Frequently Asked Questions About Lyme Disease</i><br /><br />1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them. <br /><br />2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.<br /><br />3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs. These can suppress a person's immune system, thus reducing or preventing an antibody response.<br /><br />4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.<br /><br /><b>For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.</b><br /><br />5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.<br /><br />6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.<br /><br />7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).<br /><br /><b>Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.</b><br /><br />8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.<br /><br />9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com1tag:blogger.com,1999:blog-8292128329669872257.post-79815877310019686012011-05-03T12:16:00.000-07:002011-05-03T12:19:26.768-07:00May is Lyme Awareness Month!....and certain members of the IDSA are trying to keep the populace ignorant, as usual!!<br /><br />Keep fighting, everyone!&nbsp; We're in a battle not just with the spirochetes that have invaded our bodies, but also with certain self-centered, heartless factions in the medical community.&nbsp; The IDSA group in question literally has the power of life and death over Lyme patients in this country, because they call the shots regarding Lyme diagnosis and treatment protocols.&nbsp; And they are trying to suppress the truth about THEMSELVES, of course.<br /><br />I saw the following brief article posted in one of my Lyme groups, so am re-posting it here.&nbsp; <br /><br /><i>IDSA aims to censor UNDER OUR SKIN TV broadcasts <br /><br />Posted: 28 Apr 2011 04:10 PM PDT</i> <i><br /><br />Open Eye Pictures has recently learned that the Infectious Diseases Society of America (IDSA) has been trying to stop the television broadcast of its award-winning documentary on Lyme disease, UNDER OUR SKIN. Working behind the scenes, IDSA officers and members have been contacting the Public Broadcasting Service (PBS), the National Educational Telecommunications Association (NETA), and local PBS stations, calling our film "dangerous for viewers" and full of "conspiracies.</i> <wbr></wbr><i>"<br /><br />The Public Broadcasting Service (PBS) was created in 1967 to "provide a voice for groups in the community that may otherwise be unheard," and serve as "a forum for controversy and debate" by broadcasting programs that "help us see America whole, in all its diversity." </i> <i><br /><br />We are heartened that no PBS affiliate station has folded under the pressure. UNDER OUR SKIN is the first televised documentary dedicated to educating the public about the plight of Lyme disease patients, who have been abandoned by the medical establishment, in part, because of the IDSA's flawed Lyme guidelines development process.</i> <i><br /><br />While the primary focus of UNDER OUR SKIN is to inform viewers about Lyme disease through the eyes of patients, it also includes interviews with several authors of the IDSA Lyme disease treatment guidelines. These authors were briefed by the IDSA vice president of communications before the filming began, and we believe these interviews accurately represent the IDSA viewpoint on Lyme disease. </i> <i><br /><br />UNDER OUR SKIN also shows the unfolding of the investigation into the IDSA Lyme disease guidelines by former Attorney General Richard Blumenthal of Connecticut. His final investigative report found that there was:</i> <i><br /><br />. Significant conflicts of interest among the original IDSA guidelines authors,</i> <i><br />. Suppression of scientific evidence by authors, and,<br />. Exclusion of panel members with opposing viewpoints. <br /><br />The IDSA's suppression of dissenting views continues. This time the target is UNDER OUR SKIN. (More examples of IDSA censorship are listed at the end of this article.) </i> <i><br /><br />Recently, the importance of transparency and open dialogue in medical guidelines development were underscored in a report by the Institute of Medicine (IOM), "Clinical Practice Guidelines We Can Trust." In this mandate for guidelines reform, the IDSA Lyme guidelines were called out as an example of a process gone awry: </i> <i><br /><br />"This case highlights the need for standardization and transparency in all aspects of systemic data collection and review, committee administration, and guideline development, so that questions about these issues do not detract from the science. [Guideline developers]. must be aware of the many, varied observers who will consider their development processes, particularly when their recommendations are likely to be controversial.</i> <wbr></wbr><i>" <br /><br />And in a recent study in Archives of Internal Medicine, researchers found that out of 4,200 IDSA guideline recommendations, more than half were based on no more than expert opinion and anecdote, not hard evidence, reinforcing points made in our film. (See references below.)</i> <i><br /><br />So, as investigative news organizations and documentary film producers - with the help of the Physicians Sunshine Act - begin to shine the light on endemic commercial influences on "evidence-based medicine," it's a wake up call to the medical establishment to clean up their own act before attacking outside organizations dedicated to protecting the public. </i> <i><br /><br />In other words, don't shoot the messenger.</i> <i><br />____________</i><wbr></wbr><i>_________</i><wbr></wbr><i>_________</i><wbr></wbr><i>______ <br /><br />To read more about past IDSA efforts to censor dissenting opinions:</i> <i><br /><br />Poses, R. (2006) "The Conflicted Defending the Conflicted: Infectious Disease Specialists' Attack on the LA Times Goes Awry." </i> <i><br /><br />Henderson CW, DeNoon, DJ. (1997) "Strange Bedfellows Damage CDC and NIH Credibility" AIDSWEEKLY Plus. Feb 3 1997. </i> <i><br /><br />Oransky, I. "Transparency needed in drug researchers' finances." Boston Globe. Oct. 7, 2006. </i> <i><br /><br />To read more about the flawed IDSA guidelines development process: </i> <i><br /><br />Johnson, L. and R. B. Stricker (2010). "The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines." Philos Ethics Humanit Med 5: 9. </i> <i><br /><br />IOM. (2011) "Clinical Practice Guidelines We Can Trust." Washington D.C. National Academies Press. </i> <i><br /><br />Lee, D. H. and O. Vielemeyer (2011). "Analysis of Overall Level of Evidence Behind Infectious Diseases Society of America Practice Guidelines." Arch Intern Med 171(1): 18-22. </i> <i><br /><br />Frederik Joelving, Medical "best practice" often no more than opinion".</i><i><br /><br />-- </i> <i><br />Vickie Travis<br />Former Caregiver, Eldest Child and Daughter of Adam Wesley Arnold</i>JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com0tag:blogger.com,1999:blog-8292128329669872257.post-90375212965968810852011-02-24T15:47:00.000-08:002011-02-24T16:12:58.374-08:00A Lyme Obituary - and a Message to the Living<div style="font-family: Verdana,sans-serif; text-align: center;"><span style="font-size: small;"><a href="http://1.bp.blogspot.com/-7Z_sqMcn9hc/TWbrFmH7YyI/AAAAAAAABTQ/UGGUeUEEYLw/s1600/graveyard_web.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="232" src="http://1.bp.blogspot.com/-7Z_sqMcn9hc/TWbrFmH7YyI/AAAAAAAABTQ/UGGUeUEEYLw/s400/graveyard_web.jpg" width="400" /></a></span><span style="font-size: small;"> </span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br /></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">I received this obituary in email and felt I had to share it with you. No, I didn't know the gentleman in question. Unfortunately, this is what can happen if you have Lyme disease and you're forced to rely on conventional medicine and doctors who follow the <a href="http://www.ilads.org/lyme_disease/treatment_guidelines_clearing_idsa.html">IDSA guidelines</a> for treating Lyme:</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br /></span></div><div style="color: blue; font-family: Verdana,sans-serif;"><span style="font-size: small;"><b>Vernon Dale Kyle, 55, Kansas</b></span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">Vernon Dale Kyle liked a good story. Mostly about catfishing on a long-forgotten Kansas lake. He was born Sept 24, 1955 in Garnett, Kansas. He had one best friend in those early days, and it was Don. They roamed the Kansas prairie like the buffalo, wild and free! He was raised by Chester and Edna Kyle with one brother and one sister, Jim and Aletha.&nbsp;</span></div><div style="color: blue; font-family: Verdana,sans-serif;"><span style="font-size: small;"><br /></span></div><div style="color: blue; font-family: Verdana,sans-serif;"><span style="font-size: small;">Vernon went into the US Army 82nd Airborne division and it wasn’t long before he took his turn in Vietnam in 1974, then on to Germany. He re-enlisted&nbsp;</span><span style="font-size: small;">into the US Army Veterinary Corps stationed at Ft. Ord, then to an outpost in San Diego, California. He met Peggy Miller&nbsp;</span><span style="font-size: small;">and they married at Cabrillo National Monument at the Lighthouse overlooking the ocean.</span><span style="font-size: small;">&nbsp;</span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">After discharge, he moved to Tulsa, OK where his two awesome kids were born, Jamie Lynn in 1985 and Jesse Dale in 1988. Vernon went to college and became a journeyman welder and stationary engineer. He specialized in boilers and high pressure systems, and stainless steel welding. He loved coin collecting, nature, and decorative engraving. He returned to Garnett, Kansas in the early 1990’s to support his mother when his father was ill.&nbsp;</span></div><div style="color: blue; font-family: Verdana,sans-serif;"><span style="font-size: small;"><br /></span></div><div style="color: blue; font-family: Verdana,sans-serif;"><span style="font-size: small;">He was employed at the Anderson County School District in the maintainence department until suddenly he became too ill to work in October 2007. He was life-flighted twice to the KC hospitals and in ICU and on a rehabilitation unit for five months.</span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">Vernon’s illness was bacterial in origin, his family was told by the doctors in Kansas City. When he received IV antibiotics, he&nbsp;</span><span style="font-size: small;">thrived. When the doctors took away the antibiotics, he began to fail. The doctors would never identify the name of the&nbsp;</span><span style="font-size: small;">bacteria that was trying to take Vernon’s life.&nbsp;</span><br /><br /><span style="font-size: small;">He had symptoms like abcesses in his abdomen and near his lung and kidney,&nbsp;</span><span style="font-size: small;">foot pain, rashes similar to a bartonella rash, and little red dots on his body, memory loss, dizziness, joint pain, loss of&nbsp;</span><span style="font-size: small;">feeling in his hands, feet, loss of use of fine motor skills, difficulty processing any information, body jerks (myoclonus and&nbsp;</span><span style="font-size: small;">severe muscle cramps) and seizures.</span><span style="font-size: small;">&nbsp;</span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">As time went on he experienced intense bone pain from a collapsing spinal cord,&nbsp;</span><span style="font-size: small;">and lost about 6 inches in height. One doctor his family consulted said that Lyme disease and bartonella can cause the bone</span><span style="font-size: small;"> to not have blood supply and oxygen due to excessive fibrin production in the blood. As time progressed, Vernon&nbsp;</span><span style="font-size: small;">needed oxygen, had an intermittent low heart rate of 40, would pass out. He became a diabetic and experienced&nbsp;</span><span style="font-size: small;">hepatitis and kidney failure.&nbsp;</span><br /><br /><span style="font-size: small;">By the way, his cat died of tick-borne illness.</span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">He could never understand the “controversy" over Lyme disease.&nbsp; Even though other family members were eventually diagnosed with</span><span style="font-size: small;"> Lyme disease, he was never tested by his doctors, simply because they refused.&nbsp;</span><br /><br /><span style="font-size: small;">Additionally, after numerous</span><span style="font-size: small;"> hospitalizations, he was denied long term antibiotics by infectious disease doctors in the hospital and his physicians in the&nbsp;</span><span style="font-size: small;">community, and was denied testing when his family directly asked for Lyme testing using specialty laboratories. More than three&nbsp;</span><span style="font-size: small;">years of advocacy efforts failed on his behalf.</span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">During one hospitalization, his family asked the infectious disease doctor, “Can you help him? His family has Lyme disease,&nbsp;</span><span style="font-size: small;">will you test him?” That Infectious Disease doctor said, “No,” firmly, immediately turned his back and walked out of the&nbsp;</span><span style="font-size: small;">room. The doctor discharged Vernon the next morning.&nbsp;</span><br /><br /></div><div style="color: blue; font-family: Verdana,sans-serif;"><span style="font-size: small;">But Vernon had to laugh when this same, bright, Infectious&nbsp;</span><span style="font-size: small;">Disease doctor actually said, “There are no ticks in Kansas.”</span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">Several times Vernon was too sick to leave the hospital and care for himself.&nbsp; Even in his weakened&nbsp;</span><span style="font-size: small;">condition, once the hospital sent him home in a taxi without any home nursing!&nbsp; His insurance wouldn’t pay any more for&nbsp;</span><span style="font-size: small;">his care. Not even Adult Protective Services would intervene, even after many calls.</span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">Vernon learned NOT to mention Lyme disease to anyone. No one was willing to test and treat him for Lyme disease and bartonella. Not the Veteran’s Administration hospital, not the big medical centers in Kansas City, nor his local doctor. But they were all perfectly willing to let him suffer and die from tick-borne illnesses. Ultimately, he lost the war.</span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">Vernon was left by his doctors to debilitate, and after losing balance, he had repeated traumatic brain injuries from falling. He later was able to get assistance through the TBI waiver program, but after many calls for a higher level of care, even this system failed him.&nbsp;</span><br /><br /><span style="font-size: small;">His family later discovered that he had gone a month without a bath, and often didn’t have food or water, and went to the hospital on his birthday after he collapsed from carbon monoxide poisoning from his furnace.</span><span style="font-size: small;"> Thankfully, he was with family that day and he was admitted for another time in the ICU.&nbsp;</span><br /><br /></div><div style="color: blue; font-family: Verdana,sans-serif;"><span style="font-size: small;">Yet those medical professionals who were suppose to care&nbsp;</span><span style="font-size: small;">for him, didn’t. Every time his family would try to get help for him, those in charge would fight his family. They even refused to help him to apply for full Veteran’s benefits as a Vietnam veteran, and he often suffered from not having enough money to live. He took it well. He kept his doctors laughing even when he knew they were going to let him die.</span><span style="font-size: small;">&nbsp;</span><span style="font-size: small;"><br /></span><span style="font-size: small;"><br /></span><span style="font-size: small;">He lived with the courage of a warrior, and endured and persevered through unrelenting pain to the end, which came on Sunday, October 3, 2010. He left a good example of courage under fire, and joy in the midst of sorrow. At his memorial service, his son-in-law recited “Invictus,”&nbsp;</span><br /><br /><span style="font-size: small;">The more his body was crushed by Lyme disease and bartonella, the sweeter and more loving he became. He had given his heart to his Savior, Jesus Christ, rather late in life, and it was evident that his life had changed.</span><br /><br /></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;">He is already greatly missed by the love of his life, Peggy, and his children, siblings, and neighbors and friends. Now he is truly free, and we are sure he is fishing in heaven and that he caught the biggest fish this time!&nbsp;</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br /></span></div><div class="separator" style="clear: both; font-family: Verdana,sans-serif; text-align: center;"><span style="font-size: small;"><a href="http://2.bp.blogspot.com/-6RUpRJdEcNE/TWbs80laISI/AAAAAAAABTU/sgN15G5EFDA/s1600/Light-Streams-Through-Clouds-Over-Puget-Sound.JPG_595.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="298" src="http://2.bp.blogspot.com/-6RUpRJdEcNE/TWbs80laISI/AAAAAAAABTU/sgN15G5EFDA/s400/Light-Streams-Through-Clouds-Over-Puget-Sound.JPG_595.jpg" width="400" /></a></span></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><br /></span></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"></span></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"></span></div><div style="font-family: Verdana,sans-serif;"></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;">Now, please understand, I'm not sharing the story of Mr. Kyle to be morbid; I'm sharing it because I feel that it's important for the Lyme community to have ALL the facts.&nbsp; There is some <i>very</i> important information in this obituary.&nbsp; For example:</span></span></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;"><br /></span></span></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;">1. You can DIE from Lyme disease.&nbsp; Yes, it is possible.</span></span><br /><br /></div><div style="font-family: Verdana,sans-serif;"></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;">2. If you have Lyme, you should be tested immediately for <a href="http://lymetwistontherocks.blogspot.com/2010/11/hypercoagulation-another-charming.html">hypercoagulation syndrome</a>; it's a very common condition for Lymies and <b>that's</b> why poor Vernon lost 6 inches in height when his spine crumbled.&nbsp; It can also lead to a stroke and prevent your medications from being effective.</span></span></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;"><br /></span></span></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;">3. There are parts of this country (USA) which have few or even NO Lyme-Literate doctors (aka LLMDs).&nbsp; And most of the "regular" doctors <i>will not treat Lyme.&nbsp; </i>Some of them live in denial of the very existence of Lyme disease, at least in their part of the country.</span></span></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;">&nbsp;&nbsp;</span></span></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;">If you live in one of those places, you should probably move.&nbsp; Seriously.&nbsp; Otherwise be prepared to fly to New York or Seattle or San Francisco every six months or so to see someone who is willing to give you long-term antibiotics (in defiance of the IDSA edict that no one should receive more than 4 weeks of antibiotics for Lyme even if they are DYING).</span></span><br /><br /></div><div style="font-family: Verdana,sans-serif;"></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;">Because<b> that's</b> the reason Vernon Kyle was not diagnosed with Lyme, why he never got proper treatment.&nbsp; His doctors had already treated him with antibiotics ... the obituary doesn't say for how long, but I assume it was at least 10 days, maybe longer.&nbsp;&nbsp;</span></span><br /><br /><span style="color: blue; font-size: small;"><span style="color: black;">All of those short-sighted, IDSA-believing doctors Vernon trusted merely said to themselves, "He's already been treated for Lyme, this must be something else!".&nbsp; They really do believe that a short course of antibiotics takes care of 100% of Lyme cases ... <i>always</i> ... end of story.</span></span><br /><br /></div><div style="font-family: Verdana,sans-serif;"></div><div style="font-family: Verdana,sans-serif;"><span style="color: blue; font-size: small;"><span style="color: black;">R.I.P., Vernon ... and catch a lot of fish! </span><br /></span><br /><div><span style="border-collapse: separate; color: black; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div style="word-wrap: break-word;"><span style="border-collapse: separate; color: black; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div style="word-wrap: break-word;"><span style="border-collapse: separate; color: black; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="border-collapse: separate; color: black; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="border-collapse: separate; color: black; font-size: small; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div><div><div><div><br style="color: blue;" /></div></div></div></div></span></span></span></div></span></div></span></div></div><div><br /></div>JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com2tag:blogger.com,1999:blog-8292128329669872257.post-21622504817671364222011-01-17T00:19:00.000-08:002011-01-17T12:57:30.136-08:00Go Directly to Jail, Do Not Pass "Go"<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/_rmj2DN55erQ/TTPzCklETOI/AAAAAAAABTE/V0WqhfWt1js/s1600/loneliness_crop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="338" src="http://1.bp.blogspot.com/_rmj2DN55erQ/TTPzCklETOI/AAAAAAAABTE/V0WqhfWt1js/s400/loneliness_crop.jpg" width="400" />&nbsp;</a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">It's so hard to explain this to people who are not chronically ill...but it's just like being in prison.&nbsp; I can't go out, I have Lyme and lupus and twenty other diagnoses, and I'm <b>extremely</b> sun-sensitive....to the point where I break out in a horrible rash if I'm in the sun for more than a few minutes.&nbsp; I get severely nauseated, sometimes even end up in the ER with chest pains after sun exposure.&nbsp; I have to wear dark glasses, even indoors. &nbsp;&nbsp;</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"></div><div class="separator" style="clear: both; text-align: left;">Besides, my driver's license is suspended for medical reasons (vertigo, narcoleptic episodes, etc.).&nbsp; I'm working with my neurologist on getting it back, and I'm hoping that I will get it back very soon, but at the moment I can't go anywhere unless someone takes me there.&nbsp; That "someone" is usually my husband, but lately he's been sick and in a lot of pain.&nbsp; We found out recently that he has Lyme too, <a href="http://lymetwistontherocks.blogspot.com/2011/01/human-to-human-transmission.html">probably caught it from me</a>.&nbsp; He doesn't feel like going anywhere, so even if I <i>wanted</i> to go somewhere (which doesn't happen very often), I can't because he won't take me.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I only get out of the house to go to doctor's appointments.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">But it's worse than that, really....it's not just that I don't leave the house, I spend most of my time in one room with the blinds closed and the lights dimmed, with my laptop as my only link to the outside world.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Because most of the time I don't feel well enough to leave my bedroom.&nbsp; My feet hurt and burn because of the <a href="http://lymetwistontherocks.blogspot.com/2011/01/pain-that-lyme-can-cause.html">erythromyalgia</a>, so it's very difficult to walk.&nbsp; I hurt all over anyway because of Lyme and RA and fibromyalgia and God-knows-what-else. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I make it to the kitchen sometimes to cook dinner.&nbsp; Occasionally I bake something. &nbsp; That's about it. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I suppose this is coming up now because I will not be able to work much longer.&nbsp; I still work part-time over the Internet for my employer, even though I've been too sick to go in to the office since early April 2010.&nbsp; But while I've been sick for quite some time, as long as I knew that I could still do my job, I felt as though I might have a future.&nbsp;&nbsp;</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Now the future seems curiously empty, as if I have been traveling in a ship over a Flat-Earth ocean and suddenly I reach the end of the world where the ocean spills off into the abyss.&nbsp; The emptiness ahead is terrifying.&nbsp;&nbsp;</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I feel so alone, which is silly because there are plenty of people in this world who are going through similar phases in their lives, who are losing their careers because of illness.&nbsp; But that doesn't help me feel any less alone.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Sorry for the negative tone of this post, but today I needed to talk about where I'm at and what I'm going through and how Lyme (and lupus, and RA, and autoimmune hepatitis, and Babesiosis, and Bartonella, and HME, and celiac disease, and etc.....) is/are affecting me TODAY.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I will post something more helpful next time, no doubt.</div>JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com3tag:blogger.com,1999:blog-8292128329669872257.post-74988009520940932832011-01-13T17:41:00.000-08:002011-01-13T17:52:08.384-08:00The pain that Lyme can cause: Erythromelalgia, or "Man-On-Fire Syndrome"<object height="385" width="480"><param name="movie" value="http://www.youtube.com/v/wXKqniqDEhU?fs=1&amp;hl=en_US&amp;rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/wXKqniqDEhU?fs=1&amp;hl=en_US&amp;rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br />I have recently been diagnosed with erythromelalgia (aka EM), a painful neurovascular disorder that is believed to be rare....in fact, Kate Conklin's video above states that fewer than 400 people in the United States have actually been diagnosed with EM.<br /><br /><a href="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Erythromelalgia">NORD (National Organization of Rare Disorders)</a> defines defines erythromelalgia thusly:<br /><br /><i><span class="feature_body" style="color: blue;">Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. (The prefix "erythro-" denotes redness, "mel-" is a combining form meaning limb or limbs, and the suffix "-algia" indicates pain.) Although erythromelalgia typically affects both sides of the body (bilateral), it may sometimes involve only one side (unilateral). In addition, the disease course may be extremely variable from case to case. For example, in some individuals, symptom onset may be gradual (insidious), with the condition potentially remaining relatively mild for years. However, in others, it may have a sudden (acute) onset, possibly spreading and becoming severe over weeks.<br /><br />The specific underlying cause of erythromelalgia remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities. Erythromelalgia may be an isolated, primary condition or occur secondary to various underlying disorders. Primary erythromelalgia may appear to occur randomly for unknown reasons (sporadically) or may be familial, suggesting autosomal dominant inheritance.</span></i><br /><br />My symptoms began suddenly, just as Kate's did in the video.&nbsp; Fortunately my erythromelalgia has not been as severe as hers, but it IS painful!&nbsp; That first day my toes suddenly swelled up and became hot and red and excruciatingly painful.&nbsp; The soles of my feet were painful too.&nbsp; The really odd thing is that my Raynaud's syndrome had been very active just before this, so I had the startling experience of seeing my toes turn from a cold ice blue to a hot beet red in just a few minutes!<br /><br />EM makes it VERY painful to walk when it's flaring.&nbsp; EM has also affected my face and ears on occasion, causing them to feel very hot, turn bright red and practically glow, but my feet seem to be the main targets of the erythromelalgia.....they are nearly always red and painful these days. <br /><br />I suspect that EM is not as rare as most doctors believe; there are likely MANY people have EM who remain undiagnosed.&nbsp; I myself recently encountered two people online who apparently have undiagnosed erythromelalgia....they reported their symptoms to me and when I told them of erythromelalgia and they looked it up online, they were able to confirm from the descriptions and pictures that's <i>exactly</i> what they do have! Of course, the reason they didn't know they had erythromelalgia in the first place is because their doctors had never heard of it. <br /><br />So you've read this far and are now wondering, "what does erythromelalgia have to do with Lyme?"<br /><br />When I first started to research EM, I found information that indicated in many cases there is no known cause.&nbsp; Erythromelalgia can be primary, that is a disease in and of itself, or it can be secondary to another illness or syndrome.&nbsp; One of the illnesses associated with EM in the literature is SLE (systemic lupus erythematosus), or lupus for short.<br /><br />In my case, I think Lyme has everything to do with my erythromelalgia!&nbsp; After all, I blame Lyme for triggering my lupus anyway (see <a href="http://lymetwistontherocks.blogspot.com/2010/12/lyme-disease-and-lupuswhats-connection.html">my previous post on lupus</a>). I know that I was born with a familial predisposition to developing lupus, but I didn't actually develop the disease until AFTER I contracted Lyme.<br /><br />Since EM can be secondary to lupus, and Lyme often mimics or triggers lupus, Lyme has very probably triggered the EM (directly or indirectly) in many of those poor souls out there who have it.<br /><br />And I found at least one Lymie who agrees with me, Kris who writes the Lyme blog called <a href="http://utahlymedisease.blogspot.com/">Lyme Lights Utah</a>.&nbsp; She too suffers from erythromelalgia and has numerous posts on this topic on her blog.&nbsp; I confess I have not read them all...yet. Please see <a href="http://utahlymedisease.blogspot.com/2009/11/erythromelalgia-and-lyme-disease.html">her very well written and interesting initial post on erythromelalgia</a> from November 2009.<br /><br />Of course, since I'm a scientist, I've continued to dig into this topic.&nbsp; I have actually come up with another reason for believing that Lyme and erythromelalgia are linked somehow, based on data in a recent medical paper I read: <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2771547/?tool=pubmed"><b>Incidence of Erythromelalgia: A Population-Based Study in Olmstead County, Minnesota</b></a>.<br /><br />The authors of this article have discovered that the incidence rate of EM is increasing over time.&nbsp; So erythromelalgia is becoming more and more common every year in Olmstead County, MN.<br /><br />Guess what else is becoming more common every year in Minnesota?&nbsp; Yep!!&nbsp; Lyme! <br /><br />I decided to compare the data for EM from the paper with the <a href="http://www.health.state.mn.us/divs/idepc/diseases/lyme/casesyear.html">data on the Minnesota State website regarding the incidence rate of Lyme disease as a function of time</a>.<br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/_rmj2DN55erQ/TS-ciKV9u7I/AAAAAAAABSw/GP5X3iMFb2A/s1600/casesyear_mn.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="http://3.bp.blogspot.com/_rmj2DN55erQ/TS-ciKV9u7I/AAAAAAAABSw/GP5X3iMFb2A/s400/casesyear_mn.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">From http://www.health.state.mn.us/divs/idepc/diseases/lyme/casesyear.html</td></tr></tbody></table>The nice graph above is from the state website.&nbsp; The medical paper put all of the EM numbers into 3 data "bins" that were each 10 years wide (1976-85, 1986-95, 1995-05).&nbsp; I used these bins to make the following graph of incidence of erythromelalgia as a function of time: <br /><br /><div style="text-align: center;"><a href="http://4.bp.blogspot.com/_rmj2DN55erQ/TS-cmS2i5YI/AAAAAAAABS0/icuDXa7l1vo/s1600/graph1.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="268" src="http://4.bp.blogspot.com/_rmj2DN55erQ/TS-cmS2i5YI/AAAAAAAABS0/icuDXa7l1vo/s400/graph1.jpg" width="400" /></a></div><br />In order to actually compare the incidence of Lyme properly to the incidence of EM in Olmstead County, I need the Lyme numbers from Olmstead County only.&nbsp; But those data were unavailable on the state website, so I used the Lyme numbers for Minnesota as a whole for comparison.&nbsp; <br /><br />I summed up the numbers in each "bin" to calculate the 10 year incidence rate; unfortunately, since Lyme came to national attention in the late '70s in Connecticut, the numbers for Lyme disease in Minnesota began in 1986, at least on that particular website.&nbsp; So I was only able to calculate numbers for two of the bins: '86-'95 and '96-'05.&nbsp; Statistically this is not "good enough" to prove anything, of course. <br /><br />The results are interesting nonetheless....I ended up scaling the Minnesota Lyme numbers by dividing them by 200, and then was <i>amazed</i> at how similar the two graphs looked, at least from 1986 - 2005!<br /><br /><div style="text-align: center;"><a href="http://4.bp.blogspot.com/_rmj2DN55erQ/TS-cm1Dh46I/AAAAAAAABS4/rCZy7ZMGiR0/s1600/graph2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="270" src="http://4.bp.blogspot.com/_rmj2DN55erQ/TS-cm1Dh46I/AAAAAAAABS4/rCZy7ZMGiR0/s400/graph2.jpg" width="400" />&nbsp;</a></div><div style="text-align: left;"><br /></div><div style="text-align: left;">So the scaled (divided by 200) Minnesota Lyme numbers (red bars) look <b>very much</b> like the Olmstead County erythromelalgia numbers (blue bars)....even though this does not suffice to prove anything, it is suggestive.&nbsp; <i><b>It is enough, at least in my mind, for doctors to tell patients who present with EM that they ought to be tested for Lyme.</b></i></div>JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com9tag:blogger.com,1999:blog-8292128329669872257.post-32743981600255661082011-01-06T16:15:00.000-08:002011-01-06T16:32:20.146-08:00Human-to-human transmission<div style="text-align: center;">&nbsp;<a href="http://1.bp.blogspot.com/_rmj2DN55erQ/TSZeXysdK2I/AAAAAAAABSg/GGRNpS72paA/s1600/couple-holding-hands.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="298" src="http://1.bp.blogspot.com/_rmj2DN55erQ/TSZeXysdK2I/AAAAAAAABSg/GGRNpS72paA/s400/couple-holding-hands.jpg" width="400" /></a></div><br />This is a post I hoped that I would NEVER have to write.&nbsp;&nbsp; Yesterday I accompanied my husband to the doctor (my LLND); he gave us the results of my husband's recent IGeneX Western Blot tests:<br /><br />IgM: bands 31, 41, and 83-93 positive<br />IgG: bands 28, 30, 41, and 66 positive<br /><br />The IgM test is IGeneX positive, although both of them are CDC negative, of course.<br /><br />I was <i>so </i>afraid of this, after he suddenly developed TWO autoimmune diseases overnight (celiac disease and psoriasis) a couple of years ago.....then he started complaining of headaches, extreme fatigue, pain in his feet, knees, neck, etc.&nbsp; My husband's health has really gone downhill recently.<br /><br />We were married in 2004, in February. My first symptoms of severe illness occurred in March 2004. But his health was good for the most part until early 2009. That's when he was dx with celiac and psoriasis. <br /><br />I've been telling him for over a year that he needed to get a Western Blot done, but he always insisted that he couldn't <i>possibly</i> have Lyme and that it was a big waste of money. He fought tooth and nail against getting this test done and then going to see my LLND.<br /><br />I believe that this is a case of sexual transmission....I gave it to him.&nbsp; :(<br /><br />I think this is an important issue, because spouses out there may be passing Lyme back and forth to each other and preventing each other from getting well.<br /><br />Luckily my husband had symptoms, which is how I finally persuaded him to be tested, but some people might not be symptomatic even if they are infected.&nbsp; Lyme can lie dormant for years until triggered by stress or something else.<br /><br />We're not SURE who got bitten by the tick, but I think that logically it had to be me, since I have so many tick-borne illnesses . My husband doesn't have symptoms of Bartonella or Babesiosis or HME. He's not nearly as sick as I am (thank goodness!), and he doesn't seem to have any neurological involvement, which is VERY good news!<br /><br />Also, I recently remembered having a bulls-eye rash, which at the time I thought was ringworm. So again, that points to me as the one who first contracted Lyme.&nbsp; He has no memory of any tick bite or rash.<br /><br />It is always possible that we were each bitten separately, but I believe that's less likely than the human-to-human transmission scenario, for the simple reason that Lyme is related to syphilis.<br /><br />I am so depressed now....JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com0tag:blogger.com,1999:blog-8292128329669872257.post-83685404625252398902011-01-03T20:14:00.000-08:002011-01-03T20:14:10.729-08:00Letter To People who are NOT struggling with Chronic Pain<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/_rmj2DN55erQ/TSKdZFxiQtI/AAAAAAAABSY/cn3GzQHHd4E/s1600/ag213_Collen_ap1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="248" src="http://1.bp.blogspot.com/_rmj2DN55erQ/TSKdZFxiQtI/AAAAAAAABSY/cn3GzQHHd4E/s400/ag213_Collen_ap1.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">From http://www.painexhibit.com/ag213_Collen</td></tr></tbody></table>In a Chronic Pain forum that I participate in from time to time, there is a reporter who is asking to interview people about their daily lives with chronic pain.&nbsp;&nbsp; I have emailed her indicating my willingness to discuss my own life and my challenges.<br /><br />But this brought to mind a letter that has been circulating in email and posted various forums for some time; the author is unknown.&nbsp; I'm posting it here because it really tells it like it is; it is truly worth reading:<br /><br /><i style="color: blue;">Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little bit about chronic pain and its effects, and of those that think they know something, many are actually misinformed.<br /><br />In the spirit of informing those of you who wish to understand...these are the things that I would like you to understand about me before you judge me.<br /><br />Please understand that being sick does not mean that I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I don’t seem like much fun to be with, but I’m still me — stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d still like to hear you talk about yours.<br /><br />Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy, that’s all. It doesn't mean I’m not in a lot of pain, or not extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But your looking so healthy!”... I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.<br /><br />Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you’re either flat on your back or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest, most frustrating, components of chronic pain.<br /><br />Please repeat the above paragraph substituting, “sit up”, “walk”, “think”, “concentrate”, “be sociable”, and so on, for the phrase "stand up"...it applies to everything. That is what chronic pain does to you.<br /><br />Please understand that chronic pain is variable. It’s quite possible (for many it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If it happens, please do not take it personally. If you are able, please try to remember how very lucky you are--to be physically able to do all the things you can do.<br /><br />Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off it may frustrate me to tears, and is not correct and if I was capable of doing some things any or all the time, don’t you think I would? I am working with my doctor and am doing what I am supposed to do. <br /><br />Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short period of time can cause more damage and physical pain that you can imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.<br /><br />Please understand that if I say I have to sit down/lie down/stay in/take these pills *now*, that probably means that I have to do it right NOW - it can’t be put off or forgotten just because I’m somewhere, or I’m even in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.<br /><br />If you want to suggest a cure for me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I may have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of it self can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we would know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked we would KNOW.<br /><br />It’s definitely not for lack of trying. If, after reading this, you still feel the need to cure, then so be it. I may or may not take what you said and discuss it with my doctor.<br /><br />If I seem touchy, it’s probably because I am. It’s not how I try to be. A matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, so accept me as I am. I know that you literally can not understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try and be understanding.<br /><br />In many ways I depend on you – on people who are not sick. I need you to visit me when I’m too sick to go out. Sometimes I need you to help with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.<br /><br />I know I've asked a lot of you, and I do thank you for listening. It really does mean a lot to me.<br /><br />AUTHOR UNKNOWN</i>JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com2tag:blogger.com,1999:blog-8292128329669872257.post-46976116180706024402011-01-01T12:15:00.000-08:002011-01-01T15:54:56.118-08:00Western Blots - what do all of those darn bands MEAN???<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/_rmj2DN55erQ/TR9lDbP8QOI/AAAAAAAABSQ/uOmw75dt2O8/s1600/westernblot.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/_rmj2DN55erQ/TR9lDbP8QOI/AAAAAAAABSQ/uOmw75dt2O8/s320/westernblot.gif" width="264" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><a href="http://www.bio.davidson.edu/courses/genomics/method/Westernblot.html">Diagram of basic steps to a Western Blot result </a></td></tr></tbody></table><div class="PostMessageBody"></div><div class="PostMessageBody">OK, this is an important issue; you should know what your medical tests mean.&nbsp; And always, always get copies of all blood work (or any other type of test for that matter)!</div><div class="PostMessageBody"><br /></div>First of all, you should know that the Western Blot blood test does <b>not </b>actually test for the presence of Lyme disease.&nbsp; It tests for it <i>indirectly</i> by looking for antibodies&nbsp;made by your own immune system against the spiral-shaped bacteria (spirochetes) which cause Lyme disease.<br /><br /><div class="PostMessageBody"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/_rmj2DN55erQ/TR9m7pS-8kI/AAAAAAAABSU/7NwUsBbctnM/s1600/Borrelia_burgdorferi_%2528CDC-PHIL_-6631%2529_lores.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="210" src="http://2.bp.blogspot.com/_rmj2DN55erQ/TR9m7pS-8kI/AAAAAAAABSU/7NwUsBbctnM/s320/Borrelia_burgdorferi_%2528CDC-PHIL_-6631%2529_lores.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><a href="http://commons.wikimedia.org/wiki/File:Borrelia_burgdorferi_%28CDC-PHIL_-6631%29_lores.jpg">Lyme bacteria (spirochetes), image from Wikipedia</a> </td></tr></tbody></table></div><div class="PostMessageBody">Some of these antibodies are made to attack specific proteins on the outer surface of the bacteria, others to attack the flagellum (the tail), etc.&nbsp; Each band in the Western Blot corresponds to a certain antibody that your body might make to fight the Lyme spirochetes.</div><div class="PostMessageBody"><br /></div><div class="PostMessageBody">I should also point out that which of these bands are important and specific for Lyme and which are not is still a bit controversial (depends on which researcher you talk to); the list below is a synthesis of a couple of different lists that I found online.<b>&nbsp;</b><br /><br /><b>Western Blot Bands description</b> (note: <i>cross-reactive</i> means it could indicate other spirochetes, <i>specific</i> means it ONLY happens when Lyme disease is present.&nbsp; <i>Borrellia </i>or<i> Bb</i> is Lyme disease.):</div><br />18 p18 flagellin fragment<br />20 cross-reactive for Borrellia<br />21 unknown<br /><b><span style="color: red;">22 specific for Bb, probably really the 23/25 band</span><br style="color: red;" /> <span style="color: red;">23-25 outer surface protein C (OspC), specific for Bb </span></b><br /><b style="color: red;">28 outer surface protein D (OspD); Oms28; specific for Bb</b><b style="color: red;">&nbsp;</b><br /><b style="color: red;">30 OspA substrate binding protein; common in European and one California strain</b><br /><b><span style="color: red;">31 outer surface protein A (OspA), specific for Bb</span><br style="color: red;" /> <span style="color: red;">34 outer surface protein B (OspB); specific for Bb</span><br style="color: red;" /> <span style="color: red;">35 specific for Bb</span><br style="color: red;" /> <span style="color: red;">37 specific for Bb</span></b><br />38 cross-reactive for Bb<br /><b style="color: red;">39 is a major protein of Bb flagellin; specific for Bb</b><br />41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection<br />45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)<br />50 cross-reactive for all Borrellia<br />55 cross-reactive for all Borrellia<br />57 cross-reactive for all Borrellia<br />58 unknown but may be a heat-shock Bb protein<br />60 cross reactive for all Borrellia<br />66 cross-reactive for all Borrelia, common in all bacteria <br /><b style="color: red;">83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane</b><b><br style="color: red;" /> <span style="color: red;">93 unknown, probably the same protein in band 83, just migrates differently in some patients&nbsp;</span></b><br /><br />The numbers are actually the molecular weights in kilo-Daltons (kDa).&nbsp; I've highlighted the antibodies in red which (many people agree) are very specific for Lyme disease.<br /><br />IgM versus IgG is usually interpreted this way: if you have a positive IgM Western Blot, but negative IgG, it may mean that you just became infected fairly recently, because the IgM reaction to infection generally happens before the IgG.&nbsp; If you have a positive IgG it may mean an established, chronic infection.<br /><br />OK, finally we need to talk about what POSITIVE means!<br /><br />How does one decide what constitutes a positive Western Blot test?&nbsp; In some ways this seems like it would be a fairly easy question to answer, but when you realize that every person's body reacts differently to infection, and one immune system may not make the same antibodies that another immune system might make, then it becomes highly complicated.<br /><br />In addition, to follow this discussion on all levels, you must realize that most doctors in the United States are NOT well-educated about Lyme disease.&nbsp; They generally believe that:<br /><br />(a) The CDC and the Infectious Disease Society of America (IDSA) are the ultimate authorities and that anyone who disagrees with them is a crackpot.<br />(b) Lyme disease is rare, hard to catch and easy to cure (this is the IDSA official "line" and it is WRONG!!!!!!).<br />(c) Lyme disease should be treated with 2 - 4 weeks of doxycycline and THAT'S IT!&nbsp; (IDSA guidelines again.&nbsp; This makes NO sense...there are many illnesses out there that have to be treated very aggressively for months and months.)<b>&nbsp;</b><br /><br /><b>Please understand that there is a political and economic battle being waged in this country with the health insurance companies and the IDSA on one side and many, many Lyme patients who are desperately ill on the other side.</b>&nbsp; <br /><br />If you don't believe me, you need to watch <a href="http://www.underourskin.com/">Under Our Skin</a> ASAP!!<br /><br />OK, here are three sets of Western Blot criteria for determining whether or not someone has Lyme disease; let's compare them:<br /><br /><b>1. The <a href="http://www.cdc.gov/mmwr/preview/mmwrhtml/00038469.htm">current CDC criteria</a></b> (used by the IDSA and health insurance companies) for a positive Western Blot are as follows:<br /><br />&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; (a) For IgM, 2 of the following three bands have to be positive: OspC<br />&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; (22-25), 39 and 41.<br />&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; (b) For IgG, 5 of the following ten bands have to be positive: 18, OspC<br />&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.&nbsp; <br /><br />I will not go into the ins and outs of how they came up with these criteria. You can look at the CDC website for that.&nbsp; Suffice it to say that when the CDC criteria were first created, they were <b>not recommended for diagnostic purposes.</b>&nbsp; In fact, there used to be a statement on the CDC website that said so.&nbsp; I think that statement has now been taken down in an attempt to appease the IDSA.<b>&nbsp;</b><br /><br /><b>2. </b><b>The criteria used by IGeneX,</b> one of the top Lyme laboratories in the country: IGeneX considers a Western Blot (IgM or IgG) to be positive if just two or more of the following bands are positive: OspC (23-25), 31, 34, 39, 41, and 83-93. <b>&nbsp;</b><br /><br /><b>3. Possible future criteria in China:</b> I recently read an article about Lyme disease testing in China, where Lyme is spreading rapidly through the country.&nbsp; The researchers quoted by the article recommended considering a Western Blot positive if just ONE single Lyme-specific band was positive.<br /><br />So the IDSA and the health insurance companies are in cahoots, but ILADS (the International Lyme and Associated Diseases Society) is <b>opposed</b> to their anti-patient agenda and their highly restrictive and ridiculous diagnostic criteria for Lyme disease. Our heroes, the Lyme Literate doctors (aka LLMDs in the online Lyme communities) are generally member of ILADS and believe that the using the CDC WB criteria for diagnosis of Lyme disease is incorrect.<br /><br />So what's so terrible about the CDC WB criteria anyway?&nbsp; For one thing they don't mention some of the bands which are the <i>most highly specific</i> for Lyme disease, namely bands 31 and 34, aka OspA and OspB. Your body can only produce these antibodies if you have been exposed to Lyme spirochetes!<br /><br />The main reason these were left out is that several of the doctors who originally decided on the criteria were involved in an effort (at that time) to create a Lyme vaccine, and those two bands were part of the vaccine, so anyone who had been vaccinated against Lyme would test positive for 31 and 34 <i>even if they did not have Lyme</i>.&nbsp; So they deleted those two bands from the list.<br /><br /><b>However</b>, the Lyme vaccine is no longer being used because it caused terrible autoimmune reactions in a number of people who received it.&nbsp;&nbsp; But (oops!!) the CDC forgot to put those two bands back into the criteria after they stopped using the vaccine!<br /><br />And requiring FIVE bands for an IgG to be positive?&nbsp; How do you know that everyone will produce a minimum of 5 different IgG antibodies?&nbsp; And why include bands 45, 58, and 66, which are not specific for Lyme disease?&nbsp; Why not include bands that are SPECIFIC for Lyme???&nbsp; Clearly these criteria are too restrictive.<br /><br />It has been said that the current CDC testing misses <b>at least</b> half of those who truly have Lyme disease.<br /><br />As to the IGeneX criteria, these make a lot more sense, as the only band in their set that is NOT Lyme-specific is band 41.&nbsp; Band 41 is usually the first band to show up for Lyme but also is frequently positive for people with other spirochetal infections such as syphilis and certain dental infections.<br /><br />However, in my humble opinion, the proposed Chinese criteria make the most sense, since your body should not be able to produce even one single antibody to a Lyme spirochete unless you have been exposed to Lyme!<br /><br />In the opinion of many LLMDs, IGeneX is one of the best places to get a Western Blot done, as their testing is more sensitive and they also report the "indeterminate" results, which means that there was some sort of reaction there, but not a strong enough response to be considered positive.&nbsp; The indeterminate results can be considered clinically significant if a doctor wishes to include those.<br /><br />My own IGeneX Western Blots were both positive by IGeneX criteria but negative by CDC criteria.<br /><br />The positive bands from both my first and second IgM tests were 18, 30, 31, 34, and 41.&nbsp; Bands 23-25 and 39 were reported as indeterminate in the first IgM WB but only band 39 showed up as indeterminate in the second IgM WB.<br /><br />The positive bands from my first IgG WB were 30, 31, 34, 41, and 58, and in the second IgG WB bands 31, 34, 41, and 58 were positive.&nbsp; In the first IgG WB, band 23-25 was indeterminate, and in the second band 39 was indeterminate.<br /><br />Attention, all doctors employed by <i>(health insurance company which shall remain nameless)</i> who have denied my various insurance claims, and who use the CDC criteria to tell me that I don't have Lyme disease: note that many of the positive and indeterminate bands in my IgM and IgG WB results are VERY VERY specific for Lyme disease: 23-25, 30, 31, 34, and 39.<br /><br />THERE IS NO WAY IN H-E-DOUBLE-HOCKEY-STICKS THAT MY IMMUNE SYSTEM IS "RANDOMLY" PRODUCING THESE PUPPIES!!!!!JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com176tag:blogger.com,1999:blog-8292128329669872257.post-9189709299981960752010-12-31T12:41:00.000-08:002010-12-31T12:43:51.416-08:00Lyme disease and lupus...what's the connection?<div style="text-align: center;"><a href="http://1.bp.blogspot.com/_rmj2DN55erQ/TR496lKrNeI/AAAAAAAABSM/8itj50si27c/s1600/a_volar_butterflies.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="286" src="http://1.bp.blogspot.com/_rmj2DN55erQ/TR496lKrNeI/AAAAAAAABSM/8itj50si27c/s400/a_volar_butterflies.jpg" width="400" /></a>&nbsp;</div><br />Well, this is a complicated topic and I could probably go on about it all day, except for the fact that (a) my fingers are very swollen and painful today because I'm having a rheumatoid arthritis flare, and (b) my eyes are going out on me (blurry vision and double vision from the Lyme disease).&nbsp; So I'll make this fairly brief.<br /><br />Lyme can mimic MANY other diseases, including lupus, ALS (Lou Gehrig's disease), and MS.&nbsp; Unfortunately, it can also <i>trigger</i> autoimmune diseases, particularly in those who already have the genetic tendency to develop them.&nbsp; So you could have Lyme pretending to be lupus, or you could end up with the real thing! :(<br /><br />Some people ask me if any of my several autoimmune diseases (lupus, RA, autoimmune hepatitis, Hashimoto's thyroiditis, celiac disease and psoriasis) will go away when I beat Lyme disease.&nbsp; In my case, I think probably not.&nbsp; Some of them could go into remission, but I think I actually HAVE all of those illnesses, because my family is extraordinarily pre-disposed to developing them.&nbsp; We have a long history of AI disease in our family: my dad had RA, two of my aunts died of complications of lupus (kidney failure), my 2nd daughter has Hashimoto's, my 3rd daughter has lupus and Addison's disease, my niece has Grave's disease, and 3 of my 5 grandchildren have celiac disease.<br /><br />I suspect I would not have developed ALL of those AI diseases if it hadn't been for Lyme, though.&nbsp; In a space of just 2 years I developed 3 AI diseases plus fibromyalgia, and it was just a couple of years after I contracted Lyme.<br /><br />The key evidence that I actually have lupus is that some of my blood work is positive for the anti-double-stranded DNA autoantibodies, which doesn't usually happen if you just have Lyme.&nbsp; Lyme patients DO frequently have a positive ANA, but not the high level of the anti-DS DNA antibodies that I have.<br /><br />Of course with everything that I have it's difficult to disentangle the symptoms and decide which symptom is due to what.&nbsp; Most of the time I don't bother....but this morning when I woke up with the swollen painful finger joints and they refused to get better over several hours, I had to email my rheumatologist and ask him whether I should continue to try to cut down on my prednisone given the RA flareup.&nbsp;&nbsp; He said no, keep the dose where it is for now.&nbsp; I first had to figure out whether or not the pain was due to RA, so went on line to check out the symptoms to be sure.&nbsp; For example, RA can show up in the morning but will persist, whereas osteoarthritis can happen in the morning too but usually feels better after 30 minutes or so.<br /><br />Eventually I hope to get completely off the prednisone, because it is VERY bad to take steroids when you have Lyme.&nbsp; Steroids suppress your immune system, so it can't fight Lyme very effectively.&nbsp; But I have to balance the needs of my Lyme disease with the needs of my AI diseases.&nbsp; Prednisone has undoubtedly saved my liver from destruction by my immune system, which has become very confused and tried to kill several of my organs.&nbsp; It actually did kill my thyroid.&nbsp;&nbsp; But more about that later....<br /><br />In any case, I wish everyone a very Happy (and hopefully HEALTHY) New Year!!!JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com9tag:blogger.com,1999:blog-8292128329669872257.post-44503251240149304302010-11-13T15:16:00.000-08:002010-11-13T15:53:10.920-08:00Hypercoagulation, another charming feature of Lyme disease!<div style="text-align: center;"><a href="http://2.bp.blogspot.com/_rmj2DN55erQ/TN8a5AmnGcI/AAAAAAAABRc/pqckGuS_gFk/s1600/injection.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="260" src="http://2.bp.blogspot.com/_rmj2DN55erQ/TN8a5AmnGcI/AAAAAAAABRc/pqckGuS_gFk/s400/injection.jpg" width="400" /></a></div><br />If you have Lyme disease, this post is meant to be both a warning and call to action for you.....please read and take it seriously!<br /><br />It literally took me months and months and months to get serious about testing for hypercoagulation (i.e., "thick blood"), after one of my friends in a Lyme disease forum urged me to do so.....and sure enough, I've got it!<br /><br />One LLMD claims that out of 900 patients, at least 90% have had hypercoagulation issues. While only 5% of the "normal" population are ever diagnosed with hypercoagulation!<br /><br />My doctor ordered the following blood tests for me: Hemex Laboratories' ISAC (Immune System Activation of Coagulation) test panel and Hereditary Hypercoagulation test panel. My blood coagulation results were very abnormal.<br /><br />So what exactly <b>is</b> hypercoagulation?<br /><br />It's a condition in which your blood will clot <i>more quickly</i> than normal, and it causes your actual blood flow, especially through the smallest capillaries, to be <i>slower</i> than usual. <br /><br />Why is this such a bad thing? Well, if your blood is clotting too quickly and easily, and the various clotting factor levels (fibrinogen, fibrin, thrombin/antithrombin complexes, fragment 1+2, and Factor II (prothrombin) activity) are too high, this can even lead to a stroke. <br /><br />At the very least, your body will not receive oxygen, nutrients, or medications as rapidly as it would if your blood was actually flowing at normal speed. The smallest blood vessels (capillaries), are only about<b></b> 8 microns in diameter. A 7-micron-wide red blood cell may not be able to make it through a capillary with sludge-y deposits of fibrinogen attached to its walls....this could ultimately lead to cellular anoxia, starvation and death. <br /><br />And It DEFINITELY makes your heart work harder!<br /><br />Apparently this is a favorite tactic of the Lyme bacteria (i.e., increasing the coagulation components in your blood); they prevent your cells from getting the nutrients they need, while creating hiding places for themselves to avoid Lyme treatments....the fibrin clumps clinging to the endothelial surfaces of the capillary walls make nice little nests to hide in.<br /><br />So what can be done about<b></b> hypercoagulation??<br /><br />My LLMD has prescribed subcutaneous heparin injections, 1 cc (5000 units) twice a day. I started them a couple of days ago. It's really not that hard to give yourself subcutaneous injections. Just type "how to give yourself a subcutaneous injection" into Google and you'll get a bunch of hits, very helpful.<br /><br />My online friend has told me that the heparin shots she's been taking for months have made a HUGE difference in how she feels. <br /><br />Now, yes, there are "natural" remedies too, I believe, but I've read that they are not as effective as heparin. One LLMD claims that heparin is not only a blood thinner, it is also anti-inflammatory, antiviral, antibacterial, and may even be anti-cancer.JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com7tag:blogger.com,1999:blog-8292128329669872257.post-80013909519688763252010-10-29T19:10:00.000-07:002010-10-29T20:43:51.928-07:00Food aversion, Babesiosis, and Mepron - Ann Marie's Berry SmoothieI was going through a period of food aversion recently; this is not unusual for people with Lyme disease and its various co-infections.&nbsp; Unfortunately, I happened to be taking several medications which must be taken with food!<br /><br />One of these was Mepron, an anti-malarial which also works on Babesia, another charming tick-borne disease I have.&nbsp; Every teaspoon of Mepron needs to taken with approximately 20 grams of fat!&nbsp; How could I do that when I could barely eat anything??<br /><br />Fortunately, a friend of mine who also has Lyme gave me her recipe for berry smoothies.&nbsp; She adds almond flour to the smoothie to provide fiber, extra protein and nutrition, and which, combined with the Greek yogurt, just happens to add up to a total of 20 grams of fat!<br /><br />I thought I should share this in case it might be helpful to someone else on Mepron (particularly someone who has no appetite!).<br /><br /><b><span style="font-style: italic;">Ingredients:</span></b><br /><br />1/4 C Greek-style yogurt, plain (I use Trader Joe's)<br />1/4 C almond flour or almond meal (make sure it's certified gluten free!)<br />frozen/fresh fruit (blueberries, strawberries - nothing too sweet)<br />a dash of aloe juice to soothe the stomach<br />a dash of water with lime<br /><br /><b><span style="font-style: italic;">Directions:</span></b><br /><br />Whip everything up in your blender or magic bullet, and voila!<br /><br />According to the nutrition info, there should be exactly 20 grams of fat in this, and I can assure you that it does not seem fatty when it's going down. Yay for almond meal!<br /><br />I have to stay on a fairly low carb diet now (just found out that I'm pre-diabetic, oh joy!). The nice thing about this smoothie is that the carb content is not bad (&lt; 10 grams?) and if it needs to be sweeter I can add a trace of stevia without adding to the carbs.JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com0tag:blogger.com,1999:blog-8292128329669872257.post-62996036378601353392010-10-23T13:37:00.000-07:002010-10-23T13:55:27.330-07:00Eating right to get well....and save the planet<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/_rmj2DN55erQ/TMNLtwiA8hI/AAAAAAAABQw/yvLRtMPBkjc/s1600/Earth-1-1024x768.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://2.bp.blogspot.com/_rmj2DN55erQ/TMNLtwiA8hI/AAAAAAAABQw/yvLRtMPBkjc/s320/Earth-1-1024x768.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"></div><br />I'm going to get up on my soapbox here....this topic came up recently on one of the Lyme forums I belong to and I think it's REALLY important to get this one right!<br /><br />For a long time I was very confused by all of the conflicting information out there: high-protein/low-carb versus low-fat/high-carb, vegetarians and vegans, sustainability, organic farming, and trying to do the right things for the environment.&nbsp; And what about those messages that have been drilled into us for decades, like the USDA guidelines and the food pyramid, for goodness sake???<br /><br />Who to believe?<br /><br />I have only recently figured things out (at least as far as I'm concerned).&nbsp; For me, it was a three-step process.&nbsp; I thought it might help if I explained the process by which I arrived at my current state of certainty about<b></b> which diet is the best. Please note that the following is the truth only in my humble opinion....and I already know that I do not know everything!!<br /><br />The first thing that helped me is that, in the past, I followed the Atkins diet for a very long time (years) and I KNOW that I felt better on that diet than I have ever felt, before or since. So I had that personal experience to go by.<br /><br />In addition I was diagnosed with celiac disease in 2008, which means I cannot eat anything containing gluten. See my <a href="http://autoimmunediseasesgfliving.blogspot.com/">Gluten Free Living</a> and <a href="http://joannsgfrecipes.blogspot.com/">Gluten Free Recipe</a> blogs for more info.&nbsp; Of course, the fact that I felt good on the Atkins diet makes sense, because it's very low gluten, if not gluten free (depending on how strict one is).<br /><br />By the way, it seems that being "gluten free" has become sort of a new fad diet in this country, mostly because of Elisabeth Hasselbeck and her book, I suppose.&nbsp; And many people follow it rather casually, "cheating" now and then by eating gluten-y snacks.....but anyone with celiac disease or gluten intolerance CANNOT cheat, unless they want to be very, very sick.<br /><br />For any of you reading this who are <i>actually</i> gluten-intolerant or have celiac disease, I must point out that you CANNOT eat rye, barley, wheat (including spelt, kamut, bulgur, cous cous, etc) or ANY grain that is in any way related to these. You cannot eat (most) oats either, because of contamination issues - farmers typically grow wheat one year, oats the next, on the same fields and they are processed with the same equipment.<br /><br />There <i>are </i>certified gluten free oats grown by conscientious farmers who understand the cross-contamination issue, but a few rare celiacs (like me for instance) cannot even eat certified gluten free oats, because we react to the protein called avenin (molecular structure similar to gluten) which is in oats. <br /><br />For those of you who are just eating gluten free because you've heard it's healthier, you can do whatever you want...be gluten free during the week and eat gluten on the weekends without (obvious) consequences.<br /><br />I don't have that luxury.<br /><br />And for those of us with Lyme disease, it turns out that being gluten free and low carb helps!&nbsp; Gluten causes inflammation, which should definitely be avoided, and carbohydrates/sugars feed the spirochetes, so it's important to eat low carb if you have Lyme.<br /><br /><div style="color: black;"><b>So my experience with the Atkins diet plus being diagnosed with celiac disease was step #1.</b></div><div style="color: blue;"><br /></div>Then I started reading, both online and in books, about<b></b> the theory that we should eat the way our ancestors ate. This makes sense to me, as a scientist....we should eat the way that man "in the wild" eats. So how did our ancestors eat? How do hunter-gatherers today eat!? Well, they weren't (and aren't) vegetarians, that's for sure! Or they would have died in one of the Ice Ages....very few plants grew in Europe during those times!<br /><br />The so-called <a href="http://paleodiet.com/">Paleo Diet</a> seems to be the right one; it makes total sense to me. And the proponents of this diet have proven to me that they've actually done their homework. For instance, they compare the gastrointestinal system of a carnivore (wolf or dog) to that of man, and to that of a herbivore (cow). Guess what? We are designed to be carnivores. But we CAN eat some plant foods without harm, just as dogs or cats can. It's just that MEAT (or eggs, nuts, fish) should make up a large portion of our diet (sorry for offending the vegetarians and the vegans, but there it is).<br /><br />Please understand that farming (agriculture) is a VERY recent development; humans have only had agriculture for about<b></b> 10,000 years. Our bodies did NOT develop eating the foods that we eat today.<br /><br />It turns out that the food pyramid is simply a very successful marketing ploy created by people trying to sell grain.<br /><br />Of course, this is the explanation for celiac disease and gluten intolerance....the human body is not built to process grains of ANY type. Nor are ruminants like cows....the modern practice of feeding corn to cattle actually makes them ill. But it gets them to market weight in half the time, so who cares, right? :(<br /><br />I personally believe that the modern human diet with its emphasis on grains is at the root of the obesity epidemic. If grain gets cows to fatten up twice as fast, what do you think it has done to us??<br /><br />And once again, avoiding grains is important for those with Lyme, since grains are high carb! <br /><br /><b>Figuring out that humans really ARE carnivores and that ALL grains are bad for us was step #2.</b><br /><br />Then recently I bought the book, <a href="http://www.google.com/products/catalog?q=the+vegetarian+myth&amp;cid=3265946806575203487&amp;ei=Rj3DTNm9JqXOjAT6v9DQDQ&amp;sa=title&amp;ved=0CAcQ8wIwADgA#p"><i>The Vegetarian Myth</i></a>, and I was simply blown away when I read it. The author (a former vegan) explains in great detail how monocrop agriculture (the huge fields of wheat, soy, corn, etc) is destroying our planet, because it is depleting the topsoil at an incredible rate, much faster than nature can replace it.<br /><br />Now you must understand....one of my graduate degrees is in Soil Science, so this is a subject that I UNDERSTAND. And this woman is RIGHT. Many soils take hundreds or even thousands of years to develop, and the monocrops are destroying our topsoil at an incredible rate. And when it's gone, we will STARVE. Unless we change the way we eat.<br /><br />Cows are supposed to eat <b>grass</b>, and WE are supposed to eat the foods that the hunter-gatherers (our ancestors) did: meat, fish, nuts, eggs, greens, root veggies, berries, etc. Nothing else... and definitely nothing processed!!&nbsp; Farming in a small, local way is not a bad thing; growing vegetables and fruit, as long as we do it in our own small plots in a sustainable way, and raising free-range poultry and grass-fed cattle who are allowed to graze freely as God intended will NOT harm the environment. <br /><br />But whatever you do, DON'T eat soy!! 91% of the soy grown in this country is genetically modified, and it is TOXIC. Read what happened to hamsters in just 3 generations after they ate GM soy:<br /><br /><a href="http://www.huffingtonpost.com/jeffrey-smith/genetically-modified-soy_b_544575.html" rel="nofollow" target="_blank">www.huffingtonpost.com/jeffrey-smith/genetically-modified-soy_b_544575.html</a><br /><br />So not only should we eat Paleo, but we need to stop purchasing food that has been trucked for thousands of miles and only eat what grows locally, and completely STOP eating grains and soy!<br /><br /><b>Reading that book was step #3.</b><br /><br />NOTE: for anyone who may read <i>The Vegetarian Myth</i>, you have to have a healthy level of skepticism and skip over some of the weirder portions, because the author goes off on political tangents (for example, she's very anti-male-dominance and her anti-male rants distract from her truly important messages about saving the planet).&nbsp; In other words, be as smart as a donkey and just "eat the hay and leave the sticks", as one friend of mine (a good ole boy from Oklahoma) used to say.<br /><br />So, now I am convinced. I have gone Paleo and totally grain free (fortunately I created a few <a href="http://joannsgfrecipes.blogspot.com/search/label/grain%20free">recipes for grain free biscuits and bread, etc., made with coconut and almond flours</a>). I've started losing weight, even on PREDNISONE! And I need to lose weight.<br /><br />NOTE: Those of you who need to gain weight should not lose weight on the Paleo diet. You will likely gain until you reach a healthy weight.<br /><br />I do hope this post has been helpful to someone, and has not increased the confusion level out there. I just felt I should explain how I decided on the "right" way to eat.&nbsp; Of course, for both weight loss and in an effort to avoid feeding the Lyme bacteria, I try to eat low carb, and so limit my intake of fruit and sweeteners such as agave and coconut nectars.JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com0tag:blogger.com,1999:blog-8292128329669872257.post-13941299437649897632010-10-18T14:17:00.000-07:002010-10-18T14:59:02.450-07:00Warning, warning.....<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/_rmj2DN55erQ/TLyayhBS7tI/AAAAAAAABQY/Cvp93_R7ckM/s1600/robot.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/_rmj2DN55erQ/TLyayhBS7tI/AAAAAAAABQY/Cvp93_R7ckM/s1600/robot.jpg" /></a></div><div class="post-header"></div>.....danger, Will Robinson!<br /><br />(For those who are too young to have watched television in the 1960s, this is a reference to a VERY old TV show called <span style="font-style: italic;">Lost In Space</span>. The robot, pictured above, used to say this quite frequently.)<br /><br />I'm sharing the story of my chronic illnesses, how they developed, how long it took to diagnose them, etc., as a warning because it just may help someone who is in diagnostic limbo.&nbsp; My story is sort of a mystery novel...tracking down the culprit, step by step (with the occasional blunder off the track), until finally you have him cornered!<br /><br />(NOTE: I posted this story on <a href="http://autoimmunediseasesgfliving.blogspot.com/">one of my other blogs</a> some time ago, but it really belongs here.&nbsp; This post has been updated with new information as well.)<br /><br />Background: my family has a <i><b>strong</b></i> genetic predisposition to autoimmune diseases; two of my dad's sisters died from complications of lupus, my dad had RA, one daughter has Hashimoto's thyroiditis while another has lupus. Three out of 5 of my grandchildren have celiac disease.&nbsp; Many of my cousins, nieces, nephews suffer from AI diseases as well.<br /><br />I've probably had celiac disease since infancy, plus psoriasis and Hashimoto's thyroiditis since I was in my teens. I wasn't diagnosed with Hashi's until my thyroid was basically dead though, in my early thirties, and wasn't diagnosed with celiac until <b>much</b> later in life...more on that further down.<br /><br />One morning in March 2004, while standing in front of a mirror in the lady's room at work, I noticed that the whites of my eyes were yellow!&nbsp; I went to the doctor immediately of course, and it turned out to be a very serious case of hepatitis (my liver enzymes, AST/ALT, were above 3500 and normal is less than 40!!), but all virus tests from A to Z were negative. In fact, ALL tests for any known disease that my hepatologist could think of were negative. My doctors were just beginning to mutter under their breaths about a liver transplant...then I discontinued an over-the-counter herbal medication I was taking and things began to improve spontaneously.<br /><br />Of course I was off work for weeks and weeks and then had to endure months of my skin and eyes being the color of a yellow highlighter (along with the not-so-hilarious comments from my colleagues about my resemblance to Marge Simpson), but I thought it was just an isolated health incident. Eventually I was "well" again....so I thought.<br /><br />I recently remembered a cold December day in 2005 when I went to the doctor with a round red ring-like rash on my inner right thigh.&nbsp; I had tried to see my regular PCP, who was female, but she wasn't available so I saw the doctor covering for her, a male doctor that I never particularly liked.<br /><br />I told him I thought I had ringworm, but couldn't figure out where I'd contracted it since we had no pets (our cat Cassidy had died 6 months earlier).&nbsp; The doctor stated rather condescendingly that he didn't think it was ringworm, but conceded it <i>might</i> be some sort of "fungus" infection and gave me an ointment for it.&nbsp; He really didn't appear to have any idea what the rash was, nor did he care.<br /><br />The ointment didn't seem to do any good, so I discontinued using it after a few days.&nbsp; Slowly the red ring expanded but it faded as it got bigger so I didn't worry about it anymore.&nbsp; It was gone after a few weeks.&nbsp; <br /><br />My only other new complaint that I had mentioned to the doctor during that visit was knee pain, which sort of came and went.&nbsp; It seemed to move around to other joints too, but it appeared most often in my knee. The doctor brushed it off as merely part of "getting older" and told me to take ibuprofen for it.<br /><br />More than a year later, in the summer of 2007, I noticed severe back pain while my family and I were spending the day at an amusement park. I kept having to stop and sit....I had never had problems like that before. We ended up cutting our visit short and going home because of the pain.<br /><br />I went to see my doctor about it and she x-rayed my back but there was nothing on the x-rays to explain the pain. She laughed and told me that I was the only person over the age of 40 that DIDN'T have arthritis in my back! She did not offer to do MRIs, nor any other tests at all, for that matter. Nor did she refer me to a specialist. I felt as though I was basically dismissed as a hypochondriac.<br /><br />But the pain just kept getting worse and worse; by the spring of 2008 I could only walk or stand for maybe 10 minutes at a time. This was a problem because, in addition to a full time day job (thankfully sitting at a desk!), I was a college math instructor part-time in the evening, and that required me to stand.<br /><br />I actually ended up in a wheelchair by September 2008, but persuaded the college administration to give me special tools that would allow me to teach sitting down.<br /><br />In addition, I was developing MANY other bizarre symptoms that helped to keep me in that wheelchair: maddening muscle spasms in my feet, toes, hands, fingers, and ankles, peripheral neuropathy, vertigo, double vision, gastric problems, bowel and bladder issues, "brain fog",&nbsp; horrible daily migraines, and lots of PAIN everywhere.&nbsp; I was also inexplicably gaining weight....I had not changed my diet; in fact, I was eating less than before because I simply wasn't that hungry, as I was more sedentary.&nbsp; But I continued to gain.<br /><br />In desperation I began to seek out other doctors: rheumatologists, neurologists, gastroenterologists, etc., etc. Sure enough I was diagnosed with fibromyalgia, rheumatoid arthritis, autoimmune hepatitis, lupus, and celiac disease (all autoimmune diseases). I was put on several different medications, including the dreaded prednisone, which only exacerbated my weight gain.&nbsp; But the cause of my back pain and my weird neurological symptoms remained unexplained.<br /><br />I joined several online health groups, including <a href="http://www.celiac.com/gluten-free/">celiac.com</a>, which has a board with a number of forums exclusively for celiac disease or gluten intolerance issues.&nbsp; I learned a great deal about celiac disease, and about <a href="http://www.umm.edu/news/releases/zonulin.htm">its role in triggering other autoimmune diseases</a>.&nbsp; I decided at that time that celiac disease had created the right conditions for me to develop all of my other AI diseases.&nbsp; I felt that I finally understood everything....well, almost, anyway.<br /><br />But I still didn't know WHY my lower back hurt so bad that I could only stand or walk for a few minutes at a time, and why I had so many neurological symptoms.&nbsp; And was celiac REALLY to blame for ALL of my other autoimmune diseases? <br /><br />In the meantime, one of my online friends (Alison) at the celiac forum was absolutely shocked at the number of diagnoses that I had racked up in a mere 2 years.&nbsp; She told me that I MUST get tested for Lyme disease. I insisted that it was impossible (I'm not the outdoorsy type, I hadn't been camping in years, I hadn't had a pet since my cat died, etc.) but Alison kept pestering me and pestering me until I decided to get tested just to shut her up.....LOL! <br /><br />Ans of course, I DID test positive for Lyme, and have now been under treatment for 10 months with several different antibiotics. Unfortunately it appears that I have had Lyme for years now.....I believe I was likely bitten by an infected tick shortly before my episode of "cryptogenic" hepatitis in 2004. Lyme disease doesn't usually affect the liver that dramatically, although there is a condition known as "Lyme hepatitis", but some of the coinfections (Babesiosis, Ehrlichiosis, and Bartonella),&nbsp; can definitely cause liver damage! And I apparently have all three.<br /><br />And the latest piece of information I found on the Internet has been invaluable: I found a website that discusses Lyme disease in cats, <a href="http://www.cat-health-guide.org/lyme-disease-in-cats.html">here</a>.&nbsp; It was the "smoking gun".&nbsp; It saddens me to think that my sweet Cassidy may have suffered from Lyme disease until it was too late to save her (while her vet and I remained clueless), but I think this is the last crucial piece of the puzzle.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/_rmj2DN55erQ/TLy5PL7VqGI/AAAAAAAABQg/mTxg5OkfMbc/s1600/cassidy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/_rmj2DN55erQ/TLy5PL7VqGI/AAAAAAAABQg/mTxg5OkfMbc/s1600/cassidy.jpg" /></a></div><br />I really, honestly believe that I've figured out how and when I contracted Lyme!!&nbsp; Here is my hypothesis: <br /><br />Because I got Lyme disease from SOMEWHERE, and because of the circumstances of her death and her symptoms prior to death, I feel fairly certain that Cassidy died of untreated Lyme disease.&nbsp; Probably she had carried a tick (or even ticks) into our house where a Lyme-infected tick eventually bit me.&nbsp; This almost certainly occurred in early 2004, just before I became so seriously ill.&nbsp; I did not notice the tick bite, nor any ring-like rash at that time, but this is fairly common.<br /><br />Besides Lyme disease, I contracted at least three additional tick-borne diseases, and one of them was probably the cause of the severe case of hepatitis I came down with.&nbsp; The over-the-counter herbal supplement I was taking simply added to the liver irritation being caused by the infection.<br /><br />Cassidy passed away from kidney failure in June 2005.&nbsp; She was quite listless for months preceding her death, and towards the end was refusing to eat or drink anything.&nbsp; We tried to hydrate her intravenously, but she was just too far gone.&nbsp; <br /><br />Wait a minute, you say?&nbsp; What about the ring-like rash in December 2005?&nbsp; That's the physical sign of a tick bite, and generally appears within a few weeks of the bite!&nbsp; So must I have actually been bitten in 2005?!?<br /><br />Well yes, that rash likely was erythema migrans (aka EM, the Lyme "bullseye" rash), particularly since it was associated with joint pain simultaneously, but the <i><b>problem</b></i> is that it could either have indicated the original bite, or merely been a <i><b>recurrence</b></i> of EM.&nbsp; EM can show up more than once after you've been bitten, and can even occur in late-stage Lyme, <i>i.e.</i>, after someone has had it for a long time. This just adds to the confusion when you're trying to construct a timeline and figure out when you were first infected with Lyme disease!<br /><br />But I should allow for the possibility that this WAS the original bite.&nbsp; So I will say that I either acquired Lyme + co-infections in early 2004, or late in 2005.&nbsp; Unfortunately my hepatologist did NOT think of testing me in 2004 for Lyme or any of the associated coinfections; doctors rarely think of doing testing for Lyme, actually.&nbsp; If I got it in November or December 2005, then Cassidy, rest her soul, had nothing to do with it.&nbsp; <br /><br />In any case, I felt fairly healthy for some time after I recovered from the 2004 episode of hepatitis, but the Lyme spirochetes were apparently busily chewing on my spinal disks from 2004 (or 2005) until 2007....the bacteria LOVE collagen, so they frequently show up in the disks and accelerate degenerative disk disease to the point of causing radiculopathy even in very young adults.<br /><br />Spinal MRIs <i><b>FINALLY</b></i> uncovered the secret of my back pain....bulging disks pressing on spinal nerves. And my other issues such as vertigo, double vision, etc., can also be attributed to either Lyme or Bartonella.<br /><br />In addition to all of this damage, Lyme disease almost certainly <i>helped</i> to trigger the astounding number of new autoimmune diseases and related syndromes I developed, including my autoimmune hepatitis, rheumatoid arthritis, lupus, and fibromyalgia. Lyme is notorious for triggering and/or mimicking autoimmune diseases and fibro.<br /><br />I still blame celiac disease for contributing to the problem, especially for the Hashimoto's thyroiditis and psoriasis which I developed in adolescence.<br /><br />How I wish I had known much, much earlier that I should NEVER eat gluten!!<br /><br />Medical mysteries solved! :(<br /><br />So please, any of you out there in diagnostic limbo....particularly those who have suddenly had an EXPLOSION of autoimmune diseases like mine, <i>please</i> get tested for Lyme disease! Most doctors do not think of Lyme as a big problem (it IS) because they have told it's rare (it ISN'T).<br /><br />Please visit the Lyme forum at <a href="http://www.healingwell.com/community/default.aspx?c=4">HealingWell.com</a> plus the following helpful link for more info:<br /><br /><a href="http://www.anapsid.org/lyme/index.html" target="_blank">www.anapsid.org/lyme/index.html</a><br /><br />Melissa Kaplan, the creator of that website, has LOTS of extremely good links on that page to other informative sites.<br /><br />If you read this far, I'm impressed!JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com1tag:blogger.com,1999:blog-8292128329669872257.post-89823355148568080122010-10-16T13:34:00.000-07:002010-10-16T16:04:24.043-07:00New beginnings....<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/_rmj2DN55erQ/TLovXGdSHBI/AAAAAAAABQU/clne71PO_Kw/s1600/sprout.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="218" src="http://3.bp.blogspot.com/_rmj2DN55erQ/TLovXGdSHBI/AAAAAAAABQU/clne71PO_Kw/s320/sprout.jpg" width="320" /></a></div>Welcome! <br /><br />This is my first post on my new Lyme disease blog.&nbsp; It will be a short one, just to kick off the site so to speak. <br /><br />I have several other blogs that I maintain (rather haphazardly since I've been so ill), and if you wish to visit them out of curiosity, the best way is to go to my "home page", <a href="http://forty-two-joann.blogspot.com/">here</a>.&nbsp; As you will see, I blog about my autoimmune diseases (including celiac disease), <a href="http://autoimmunediseasesgfliving.blogspot.com/">gluten free living</a> and my favorite <a href="http://joannsgfrecipes.blogspot.com/">gluten free recipes</a>.&nbsp; I also blog about my adopted daughter (biological granddaughter) <a href="http://planetemmaclarissa.blogspot.com/">Emma</a> and her inspiring story of (day by day) overcoming the limitations imposed by her very rare medical conditions.&nbsp; And last but not least, I occasionally blog about being both <a href="http://heavensdeclaretheglory.blogspot.com/">a scientist (an astronomer) and a Christian</a>.<br /><br />But the focus of this blog will be LYME DISEASE.&nbsp; And the so-called "co-infections"...when I was diagnosed I tested positive for Babesia and Ehrlichiosis (HME).&nbsp; I've since received a clinical diagnosis of Bartonella as well.&nbsp; My titers for EBV and CMV have been extremely high at times.<br /><br />Here I plan to discuss Lyme disease and what it has done to me.&nbsp; What it has stolen from me (hopefully temporarily). And my treatments and progress back towards health (or lack thereof).&nbsp; Hopefully some of you will find this information to be helpful.<br /><br />BTW, the name of this blog is not completely original....I'm aware of a <i>very</i> humorous Lyme blog called <a href="http://twistoflyme.blogspot.com/">With a Twist of Lyme</a> by Dr. Wiseass (?!?), and another one called called simply <a href="http://www.healthdiaries.com/lymedisease/twist/">Twist of Lyme</a>, by Jamie....and there may be others out there with similar names.<br /><br />Sadly, the first blog I mentioned has not been updated since 2007, and the second seems to have stopped sometime in 2005.&nbsp; I hope that this means that both blog authors have regained their health!&nbsp; And I also hope that they will forgive me for borrowing the "Twist of Lyme" idea from them for my blog.<br /><br />To those of you who have Lyme or even suspect you MAY have Lyme, may God grant you peace and healing.<br /><br />More soon....JoAnnhttp://www.blogger.com/profile/04506998760851891610noreply@blogger.com0